6.15 Self-Reported Psychological Disorders Among Mothers of Children With an Autism Spectrum Disorder, Type 1 Diabetes Mellitus, and Typical Development

Background Self-management of type 1 diabetes (T1D) requires numerous decisions and actions by people with T1D and their caregivers and poses many daily challenges. For those with T1D and a developmental disorder such as autism spectrum disorder (ASD), more complex challenges arise, though these remain largely unstudied. Objective This study aimed to better understand the barriers and facilitators of raising a child with T1D and ASD. Secondary analysis of web-based content (phase 1) and telephone interviews (phase 2) were conducted to further expand the existing knowledge on the challenges and successes faced by these families. Methods Phase 1 involved a qualitative analysis of publicly available online forums and blog posts by caregivers of children with both T1D and ASD. Themes from phase 1 were used to create an interview guide for further in-depth exploration via interviews. In phase 2, caregivers of children with both T1D and ASD were recruited from Penn State Health endocrinology clinics and through the web from social media posts to T1D-focused groups and sites. Interested respondents were directed to a secure web-based eligibility assessment. Information related to T1D and ASD diagnosis, contact information, and demographics were collected. On the basis of survey responses, participants were selected for a follow-up telephone interview and were asked to complete the adaptive behavior assessment system, third edition parent form to assess autism severity and upload a copy of their child’s most recent hemoglobin A1c (HbA1c) result. Interviews were transcribed, imported into NVivo qualitative data management software, and analyzed to determine common themes related to barriers and facilitators of raising a child with both ASD and T1D. Results For phase 1, 398 forum posts and blog posts between 2009 and 2016 were analyzed. Common themes related to a lack of understanding by the separate ASD and T1D caregiver communities, advice on coping techniques, rules and routines, and descriptions of the health care experience. For phase 2, 12 eligible respondents were interviewed. For interviewees, the average age of the child at diagnosis with T1D and ASD was 7.92 years and 5.55 years, respectively. Average self-reported and documented HbA1c levels for children with T1D and ASD were 8.6% (70 mmol/mol) and 8.7% (72 mmol/mol), respectively. Common themes from the interviews related to increased emotional burden, frustration surrounding the amount of information they are expected to learn, and challenges in the school setting. Conclusions Caregivers of children with both T1D and ASD face unique challenges, distinct from those faced by caregivers of individuals who have either disorder alone. Understanding these challenges may help health care providers in caring for this unique population. Referral to the diabetes online community may be a potential resource to supplement the care received by the medical community.

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

10.2196/preprints.17184 ◽

2019 ◽

Author(s):

Tamara K Oser ◽

Sean M Oser ◽

Jessica A Parascando ◽

Lee Ann Grisolano ◽

Kanthi Bangalore Krishna ◽

...

Keyword(s):

Health Care ◽

Autism Spectrum Disorder ◽

Type 1 Diabetes ◽

Phase 1 ◽

Autism Spectrum ◽

Spectrum Disorder ◽

Barriers And Facilitators ◽

Phase 2 ◽

Web Based

BACKGROUND Self-management of type 1 diabetes (T1D) requires numerous decisions and actions by people with T1D and their caregivers and poses many daily challenges. For those with T1D and a developmental disorder such as autism spectrum disorder (ASD), more complex challenges arise, though these remain largely unstudied. OBJECTIVE This study aimed to better understand the barriers and facilitators of raising a child with T1D and ASD. Secondary analysis of web-based content (phase 1) and telephone interviews (phase 2) were conducted to further expand the existing knowledge on the challenges and successes faced by these families. METHODS Phase 1 involved a qualitative analysis of publicly available online forums and blog posts by caregivers of children with both T1D and ASD. Themes from phase 1 were used to create an interview guide for further in-depth exploration via interviews. In phase 2, caregivers of children with both T1D and ASD were recruited from Penn State Health endocrinology clinics and through the web from social media posts to T1D-focused groups and sites. Interested respondents were directed to a secure web-based eligibility assessment. Information related to T1D and ASD diagnosis, contact information, and demographics were collected. On the basis of survey responses, participants were selected for a follow-up telephone interview and were asked to complete the adaptive behavior assessment system, third edition parent form to assess autism severity and upload a copy of their child’s most recent hemoglobin A1c (HbA1c) result. Interviews were transcribed, imported into NVivo qualitative data management software, and analyzed to determine common themes related to barriers and facilitators of raising a child with both ASD and T1D. RESULTS For phase 1, 398 forum posts and blog posts between 2009 and 2016 were analyzed. Common themes related to a lack of understanding by the separate ASD and T1D caregiver communities, advice on coping techniques, rules and routines, and descriptions of the health care experience. For phase 2, 12 eligible respondents were interviewed. For interviewees, the average age of the child at diagnosis with T1D and ASD was 7.92 years and 5.55 years, respectively. Average self-reported and documented HbA1c levels for children with T1D and ASD were 8.6% (70 mmol/mol) and 8.7% (72 mmol/mol), respectively. Common themes from the interviews related to increased emotional burden, frustration surrounding the amount of information they are expected to learn, and challenges in the school setting. CONCLUSIONS Caregivers of children with both T1D and ASD face unique challenges, distinct from those faced by caregivers of individuals who have either disorder alone. Understanding these challenges may help health care providers in caring for this unique population. Referral to the diabetes online community may be a potential resource to supplement the care received by the medical community. CLINICALTRIAL

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Prevalence, characteristics, and diabetes management in children with comorbid autism spectrum disorder and type 1 diabetes

Pediatric Diabetes ◽

10.1111/pedi.12848 ◽

2019 ◽

Cited By ~ 3

Author(s):

Kelly R. Stanek ◽

Erin M. Youngkin ◽

Laura L. Pyle ◽

Jennifer K. Raymond ◽

Kimberly A. Driscoll ◽

...

Keyword(s):

Autism Spectrum Disorder ◽

Type 1 Diabetes ◽

Diabetes Management ◽

Autism Spectrum ◽

Spectrum Disorder

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Assessing guideline adherence in the management of type 1 diabetes mellitus in Australian children: a population-based sample survey

BMJ Open Diabetes Research & Care ◽

10.1136/bmjdrc-2019-001141 ◽

2020 ◽

Vol 8 (1) ◽

pp. e001141

Author(s):

Richard G McGee ◽

Chris T Cowell ◽

Gaston Arnolda ◽

Hsuen P Ting ◽

Peter Hibbert ◽

...

Keyword(s):

Diabetes Mellitus ◽

Type 1 Diabetes ◽

Clinical Practice ◽

Type 1 Diabetes Mellitus ◽

Clinical Practice Guidelines ◽

Practice Guidelines ◽

Emergency Care ◽

Psychological Disorders ◽

Routine Care

IntroductionTo estimate adherence to clinical practice guidelines in selected settings at a population level for Australian children with type 1 diabetes mellitus.Research design and methodsMedical records of children with type 1 diabetes mellitus aged 0–15 years in 2012–2013 were targeted for sampling across inpatient, emergency department and community visits with specialist pediatricians in regional and metropolitan areas and tertiary pediatric hospitals in three states where approximately 60% of Australian children reside. Clinical recommendations extracted from two clinical practice guidelines were used to audit adherence. Results were aggregated across types of care (diagnosis, routine care, emergency care).ResultsSurveyors conducted 6346 indicator assessments from an audit of 539 healthcare visits by 251 children. Average adherence across all indicators was estimated at 79.9% (95% CI 69.5 to 88.0). Children with type 1 diabetes mellitus have higher rates of behavioral and psychological disorders, but only a third of children (37.9%; 95% CI 11.7 to 70.7) with suboptimal glycemic control (eg, hemoglobin A1c >10% or 86 mmol/mol) were screened for psychological disorders using a validated tool; this was the only indicator with <50% estimated adherence. Adherence by care type was: 86.1% for diagnosis (95% CI 76.7 to 92.7); 78.8% for routine care (95% CI 65.4 to 88.9) and 83.9% for emergency care (95% CI 78.4 to 88.5).ConclusionsMost indicators for care of children with type 1 diabetes mellitus were adhered to. However, there remains room to improve adherence to guidelines for optimization of practice consistency and minimization of future disease burden.

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