Abstract
Background
Caregivers of children with tic disorders experience substantial psychological and social burdens; however, existing research is predominantly cross-sectional, and their lived emotional experiences remain insufficiently explored through qualitative approaches.
Objective
This study aimed to explore the emotional experiences of primary caregivers of children with tic disorders throughout the caregiving process.
Methods
A descriptive phenomenological design was employed. Semi-structured in-depth interviews were conducted with 13 primary caregivers recruited through purposive sampling. Data collection continued until thematic saturation was reached. Interview transcripts were analyzed using Colaizzi’s seven-step method.
Results
Three main themes emerged: multiple caregiving burdens, emotional and psychological distress, and caregiving challenges and coping strategies. Caregivers reported persistent negative emotions, including anxiety, guilt, and emotional exhaustion, which were intensified by financial strain, family conflict, and limited access to professional medical services.
Conclusion
Caregivers of children with tic disorders experience considerable caregiving burdens and psychological distress, which may hinder both caregiver well-being and the child’s rehabilitation. Strengthening psychological support systems and improving access to professional healthcare resources are essential to address caregivers’ multifaceted needs.
Plain Language Summary
Why was the study done? Researchers conducted this study to map the emotional “lived experiences” of parents in China caring for children with tic disorders. While previous studies often focus on high-level numbers or medical outcomes, they frequently overlook the deeper, daily stories of these families. The goal was to uncover hidden emotional needs so that healthcare professionals can develop personalized support strategies. What did the researchers do? The researchers used a “descriptive phenomenological” design to focus on the emotions parents consciously perceive and express. They conducted in-depth, one-on-one interviews with 13 primary caregivers at a clinic in Shandong, China. To ensure authenticity, they analyzed these conversations using the systematic Colaizzi’s seven-step method to identify key themes. What did the researchers find? The study found that caregiver stress falls into three categories: multiple life burdens, emotional distress, and coping challenges. Parents face “social” embarrassment when symptoms are misunderstood and “personal” guilt, often blaming their own parenting for the disorder. Many caregivers also suppress their own anxiety to keep their child calm, which frequently leads to total emotional exhaustion. What do the findings mean? These findings suggest that medical care must move beyond just treating the child to supporting the whole family. There is an urgent need for professional psychological support for parents and better public education to reduce the social stigma that makes caregiving so much harder.
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