Survey from Family Members and Caregivers of Autism Spectrum Disorder (ASD) Patients
Description
[1] Purpose: This dataset contains survey responses from family members and caregivers of children diagnosed with autism spectrum disorder (ASD). The survey was designed to understand caregivers' 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. [2] Survey Scope: The survey covers multiple aspects of healthcare and caregiving, including: • Overall satisfaction with care: Caregivers' general feelings about the care their child receives. • Communication: The effectiveness and frequency of communication between caregivers and healthcare providers. • Emotional and medical needs: The extent to which healthcare providers address both the medical and emotional needs of children with ASD. • Sensory sensitivities: How well healthcare providers consider sensory sensitivities during care. • Decision-making: The level of involvement caregivers has in care planning and decision-making. • Care coordination: How well healthcare providers coordinate care across various specialists and services. • Mental health and sleep health: How effectively mental health and sleep issues are managed. • Support tools: The use of communication tools (e.g., visual schedules, apps, sign language) to aid in care. [3] Data Type: This dataset contains both qualitative and quantitative responses to the following areas: • Timestamp: The date and time each response was submitted. • Respondent Number: An anonymized identifier for each survey respondent. • Survey Responses: Open-ended responses to questions about satisfaction, communication, emotional support, decision-making, and care coordination. Caregivers are asked to reflect on their interactions with healthcare providers across different aspects of care. [4] Ethics and Confidentiality: 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 patients with ASD. [5] Data Access: The dataset is available for academic and research purposes. It may be shared with other researchers or institutions focusing on improving healthcare services for patients with ASD.
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Steps to reproduce
This dataset contains both qualitative and quantitative responses to the following areas: • Timestamp: The date and time each response was submitted. • Respondent Number: An anonymized identifier for each survey respondent. • Survey Responses: Open-ended responses to questions about satisfaction, communication, emotional support, decision-making, and care coordination. Caregivers are asked to reflect on their interactions with healthcare providers across different aspects of care. Example Insights from Responses: 1. Caregiver Satisfaction: Caregivers generally express satisfaction with the medical care provided but often report concerns about emotional and sensory needs being overlooked. Many caregivers wish there were a more balanced focus on both physical and emotional health. 2. Communication: While communication is described as "decent," caregivers frequently report feeling rushed during appointments and believe that healthcare providers need to take more time to understand their concerns. Many caregivers also express frustration over having to remind healthcare providers about sensory sensitivities and non-medical needs. 3. Emotional and Mental Health: There is a recurring theme that mental health issues are inadequately addressed, with caregivers feeling there is little follow-up. Many caregivers desire more practical strategies for managing their child's mental health, sleep issues, and gastrointestinal problems. 4. Care Coordination: Caregivers often feel they are doing most of the work in coordinating care across specialists. This lack of coordination and communication between providers is a significant stressor. 5. Involvement in Decision-Making: Although caregivers report being involved in the decision-making process, many feel that their voices are not always heard, and they do not have full control over decisions related to their child's care.