Challenges and Successes in Raising a Child With Type 1 Diabetes and Autism Spectrum Disorder: Mixed Methods Study

Oser, Tamara K.; Oser, Sean M.; Parascando, Jessica; Grisolano, Lee Ann; Krishna, Kanthi Bangalore; Hale, Daniel E.; Litchman, Michelle L.; Majidi, Shideh; Haidet, Paul

doi:10.2196/17184

Cited by 9 publications

(12 citation statements)

References 30 publications

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“…In fact, 80% of parents of children with ASD claimed that they sometimes felt "stretched beyond their limits" [21], and 12% of parents of children with ASD were in the clinical range for anxiety symptoms, while 25% reported clinically-significant depression symptoms [22]. Under normal circumstances, researchers identified elevated levels of parental anxiety and depression among parents of children with ASD, in comparison with both parents of TD children and parents of children with other developmental disabilities [12,23,24]. Our results revealed that raising a child with ASD was a significant independent factor that contributed to parental anxiety and depression symptoms.…”

Section: Effect Of Having a Child With Asd On Parental Anxiety And Dementioning

confidence: 99%

The relationship between 2019-nCoV and psychological distress among parents of children with autism spectrum disorder

Wang

Pan

et al. 2021

Global Health

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Objectives The psychological distress caused by COVID-19 may be pronounced among the parents of children with autism spectrum disorder (ASD). This study aimed to investigate psychological distress among parents of children with ASD during the COVID-19 pandemic. Methods A total of 1764 parents of children with ASD and 4962 parents of typically developing (TD) children were recruited. The participants completed an online survey which contained demographic information, the impact due to COVID-19 crisis, resilience, coping styles, anxiety and depression. Hierarchical linear regression was used to assess the contributions of these variables to anxiety and depression. Results After adjusting for demographic variables, the following factors were associated with parents’ anxiety and depression symptoms: (i) Whether or not the participants had a child with ASD; (ii) resilience; (iii) coping strategies, and; (iv) the impact due to COVID-19. Among these, the psychological stress caused by COVID-19 played the most important role in parental anxiety (β = 0.353) and depression (β = 0.242) symptoms. Parents of children with ASD had lower levels of resilience and positive coping, and used more negative coping strategies than parents of TD children. Among all participants, 8.0 and 24.2% of parents had symptoms of anxiety and depression, respectively. Compared to parents of TD children, more parents of children with ASD exhibited symptoms of anxiety and depression (12.2% vs. 6.6%; 31.0% vs. 21.7%, respectively). Conclusions During the COVID-19 pandemic, parents experienced varying levels of anxiety and depression, particularly, parents of children with ASD. More specific attention should be paid to parental mental health and long-term effective intervention programs, that are targeted towards parents of children with ASD, and such programs should be promoted around China in the wake of the COVID-19 crisis.

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Section: Effect Of Having a Child With Asd On Parental Anxiety And Dementioning

confidence: 99%

The relationship between 2019-nCoV and psychological distress among parents of children with autism spectrum disorder

Wang

Pan

et al. 2021

Global Health

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“… 27 This study and others using the IMPARTS screening tools have examined the prevalence of mental health problems in people with a range of long-term conditions and the role of perceived disease severity in this equation. 28 , 29 A number of groups have explored the feasibility and practicability of tailoring diabetes management interventions for persons with learning disability, 30 autism 31 or severe mental illness, 32 recognising the interaction between the conditions and how it impacts treatment.…”

Section: Next Steps: Enabling Bidirectional Prevention Of Mental and ...mentioning

confidence: 99%

Research policy for people with multiple long-term conditions and their carers

Owen

Dew

Logan

et al. 2022

Journal of Multimorbidity and Comorbidity

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People with multiple long-term conditions (MLTC) are a growing population, not only in the United Kingdom but internationally. Health and care systems need to adapt to rise to this challenge. Policymakers need to better understand how medical education and training, and service configuration and delivery should change to meet the needs of people with MLTC and their carers. A series of workshops with people with MLTC and carers across the life-course identified areas of unmet need including the impact of stigma; poorly coordinated care designed around single conditions; inadequate communication and consultations that focus on clinical outcomes rather than patient-oriented goals and imperfectly integrate mental and physical wellbeing. Research which embeds the patient voice at its centre, from inception to implementation, can provide the evidence to drive the change to patient-centred, coordinated care. This should not only improve the lives of people living with MLTC and their carers but also create a health and care system which is more effective and efficient. The challenge of MLTC needs to be bought to the fore and it will require joint effort by policymakers, practitioners, systems leaders, educators, the third sector and those living with MLTC to design a health and care system from the perspective of patients and carers, and provide practitioners with the skills and tools needed to provide the highest quality care.

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“…On the other hand, the perceived stress level was similar for parents of both groups. Under normal time, parents of children on the autism spectrum frequently report having higher levels of anxiety and depression than parents of TD children as well as children with other neurodevelopmental conditions (56)(57)(58)66). The pandemic and lockdown situations are notably stressful for parents of children on the autism spectrum.…”

Section: Group Difference (Diagnosis × Lockdown)mentioning

confidence: 99%

Impact of the COVID-19 Lockdown in Malaysia: An Examination of the Psychological Well-Being of Parent-Child Dyads and Child Behavior in Families With Children on the Autism Spectrum

et al. 2021

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Background: The COVID-19 pandemic lockdowns have adversely impacted children on the autism spectrum and their families, especially in Malaysia where this population is often marginalized. The current quantitative research aimed to investigate the impact of the Malaysian COVID-19 lockdown on the behavior and psychological distress of children formally diagnosed with an autism spectrum condition (ASC) as well as the psychological distress and well-being of their parents, in comparison with a typically developing (TD) control group.Methods: The children's ages ranged between 5 and 17 years. The sample included 72 ASC parent-child dyads and 62 TD parent-child dyads. The primary caregiver completed an online survey including the following: demographic and diagnostic information; ASC symptoms; children's inattention, hyperactivity/impulsivity, perceived stress, depression, and anxiety; parents' perceived stress, depression, anxiety, and well-being based on their experience pre- and mid-lockdown (March 18th to June 9th 2020) in Malaysia.Results: Among the ASC group, no significant pre- and mid-lockdown change was found in ASC symptoms (p > 0.05). There were no significant gender differences (boys/girls) in all the child scales. The 2 [diagnosis (ASC, TD)] × 2 [lockdown (pre-lockdown, mid-lockdown)] mixed-model ANOVAs revealed main effects of lockdown on children's attention, hyperactivity/impulsivity, anxiety, and parents' perceived stress, depression, and psychological well-being (p < 0.005). There was a main effect of diagnosis in all child and parent variables, except parents' perceived stress (p >0.005). However, there was no significant interaction effect between diagnosis and lockdown (p >0.005). All child behavior (inattention and hyperactivity/impulsivity) and child psychological distress (anxiety, depression, and perceived stress) were significantly correlated in both the ASC and TD groups (p < 0.005). On the other hand, only some of the parent variables were significantly correlated with child variables (p < 0.0045) in the ASC group while none of the parent variables were significantly correlated with the child variables (p > 0.005) in the TD group.Conclusion: The results provide preliminary evidence indicating negative effects of the Malaysian lockdown on both children on the autism spectrum and TD children, as well as their parents. These quantitative results will be triangulated with the qualitative interview data to provide a holistic understanding of the impact of the pandemic, informing translational policy and practice recommendations.

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Challenges and Successes in Raising a Child With Type 1 Diabetes and Autism Spectrum Disorder: Mixed Methods Study

Cited by 9 publications

References 30 publications

The relationship between 2019-nCoV and psychological distress among parents of children with autism spectrum disorder

The relationship between 2019-nCoV and psychological distress among parents of children with autism spectrum disorder

Research policy for people with multiple long-term conditions and their carers

Impact of the COVID-19 Lockdown in Malaysia: An Examination of the Psychological Well-Being of Parent-Child Dyads and Child Behavior in Families With Children on the Autism Spectrum

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