DOI: 10.7910/dvn/khzi5b
title: Survey from Family Members and Caregivers of Autism Spectrum Disorder (ASD) Patients

description: &lt;div style='margin-top:0in;margin-right:0in;margin-bottom:8.0pt;margin-left:0in;line-height:115%;font-size:16px;font-family:"Aptos",sans-serif;'&gt;
 &lt;p style="text-align: justify;"&gt;&lt;strong&gt;&lt;span style='line-height:115%;font-family:"Pyidaungsu",sans-serif;font-size:19px;color:#002060;'&gt;Purpose:&lt;/span&gt;&lt;/strong&gt;&lt;/p&gt;
 &lt;p style="text-align: justify;"&gt;&lt;span style='font-family:"Pyidaungsu",sans-serif;'&gt;This dataset contains survey responses from family members and caregivers of patients diagnosed with autism spectrum disorder (ASD). The survey was designed to understand caregivers&apos; experiences with healthcare providers in managing the medical, emotional, and holistic needs of patients with ASD. It aims to identify areas where care is lacking or could be improved, focusing on communication, involvement in decision-making, mental health support, and coordination between healthcare providers.&lt;/span&gt;&lt;/p&gt;
&lt;/div&gt;
&lt;div style='margin-top:0in;margin-right:0in;margin-bottom:8.0pt;margin-left:0in;line-height:115%;font-size:16px;font-family:"Aptos",sans-serif;'&gt;
 &lt;p style="text-align: justify;"&gt;&lt;strong&gt;&lt;span style='line-height:115%;font-family:"Pyidaungsu",sans-serif;font-size:19px;color:#002060;'&gt;Data Use:&lt;/span&gt;&lt;/strong&gt;&lt;span style='font-family:"Pyidaungsu",sans-serif;'&gt;&lt;br&gt; This dataset can be used to:&lt;/span&gt;&lt;/p&gt;
&lt;/div&gt;
&lt;ul style="margin-bottom:0in;margin-top:0in;" type="disc"&gt;
 &lt;li style='margin-top:0in;margin-right:0in;margin-bottom:8.0pt;margin-left:0in;line-height:115%;font-size:16px;font-family:"Aptos",sans-serif;text-align:justify;'&gt;&lt;span style='font-family:"Pyidaungsu",sans-serif;'&gt;Analyze the strengths and weaknesses of healthcare provision for children with ASD, particularly from the caregiver&apos;s perspective.&lt;/span&gt;&lt;/li&gt;
 &lt;li style='margin-top:0in;margin-right:0in;margin-bottom:8.0pt;margin-left:0in;line-height:115%;font-size:16px;font-family:"Aptos",sans-serif;text-align:justify;'&gt;&lt;span style='font-family:"Pyidaungsu",sans-serif;'&gt;Identify gaps in healthcare services, such as the need for more holistic care and emotional support.&lt;/span&gt;&lt;/li&gt;
 &lt;li style='margin-top:0in;margin-right:0in;margin-bottom:8.0pt;margin-left:0in;line-height:115%;font-size:16px;font-family:"Aptos",sans-serif;text-align:justify;'&gt;&lt;span style='font-family:"Pyidaungsu",sans-serif;'&gt;Inform the development of improved care models that balance medical treatment with attention to mental health, emotional support, and sensory sensitivities.&lt;/span&gt;&lt;/li&gt;
 &lt;li style='margin-top:0in;margin-right:0in;margin-bottom:8.0pt;margin-left:0in;line-height:115%;font-size:16px;font-family:"Aptos",sans-serif;text-align:justify;'&gt;&lt;span style='font-family:"Pyidaungsu",sans-serif;'&gt;Contribute to research on caregiver experiences, healthcare provider communication, and care coordination for patients with ASD.&lt;/span&gt;&lt;/li&gt;
&lt;/ul&gt;
&lt;p style="margin: 0in 0in 8pt; line-height: 115%; font-size: 16px; font-family: Aptos, sans-serif; text-align: justify;"&gt;&lt;strong&gt;&lt;span style='line-height:115%;font-family:"Pyidaungsu",sans-serif;font-size:19px;color:#002060;'&gt;Ethics and Confidentiality:&lt;/span&gt;&lt;/strong&gt;&lt;/p&gt;
&lt;p style='margin-top:0in;margin-right:0in;margin-bottom:8.0pt;margin-left:.5in;line-height:115%;font-size:16px;font-family:"Aptos",sans-serif;text-align:justify;'&gt;&lt;span style='font-family:"Pyidaungsu",sans-serif;'&gt;The dataset ensures respondent anonymity. No personally identifiable information is collected, and all responses are anonymized for confidentiality. Participation is voluntary, and consent was obtained from all caregivers involved. Responses will be used solely for research and analysis purposes to improve care for children with ASD.&lt;/span&gt;&lt;/p&gt;
&lt;p style='margin-top:0in;margin-right:0in;margin-bottom:8.0pt;margin-left:0in;line-height:115%;font-size:16px;font-family:"Aptos",sans-serif;text-align:justify;'&gt;&lt;strong&gt;&lt;span style='font-size:19px;line-height:115%;font-family:"Pyidaungsu",sans-serif;color:#002060;'&gt;Acknowledgment&lt;/span&gt;&lt;/strong&gt;&lt;/p&gt;
&lt;p style='margin-top:0in;margin-right:0in;margin-bottom:8.0pt;margin-left:0in;line-height:115%;font-size:16px;font-family:"Aptos",sans-serif;text-align:justify;'&gt;&lt;span style='font-family:"Pyidaungsu",sans-serif;'&gt;I would like to extend my heartfelt thanks to all the family members and caregivers who participated in this survey. Your valuable insights, experiences, and time have made an important contribution to this research. By sharing your perspectives, you are helping to improve the understanding of the challenges faced by caregivers of patients with autism spectrum disorder (ASD) and the ways in which healthcare systems can better support both patients and their families.&lt;/span&gt;&lt;/p&gt;
&lt;p style='margin-top:0in;margin-right:0in;margin-bottom:8.0pt;margin-left:0in;line-height:115%;font-size:16px;font-family:"Aptos",sans-serif;text-align:justify;'&gt;&lt;span style='font-family:"Pyidaungsu",sans-serif;'&gt;Your feedback is instrumental in shaping better care strategies, developing resources, and advocating for positive changes in the healthcare experience for families dealing with ASD. I truly appreciate your willingness to participate and your dedication to improving the lives of patients with ASD.&lt;/span&gt;&lt;/p&gt;
description: The dataset is available for academic and research purposes. It may be shared with other researchers or institutions focusing on improving healthcare services for children with ASD, following appropriate privacy and ethical guidelines.