Exploring the Emotional Experiences of Caregivers of Children With Tic Disorders: A Qualitative Study

Introduction

Tic disorder (TD) is a neurodevelopmental disorder characterized by sudden, rapid, repetitive and non-rhythmic movements or vocalizations during childhood and adolescence (Yu et al., 2024). It includes chronic tic disorder (CTD) and Tourette syndrome (TS), with a prevalence of 0.5–1% (Conte et al., 2020). TD is also very common in China, accounting for approximately 6.1% of the child population (Tinker et al., 2022). In addition to frequent tics, affected children may also have other conditions such as attention deficit hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), anxiety disorder, and depression (Girgis et al., 2022). The chronic course of TD seriously affects the quality of life of children with the disease, causing long-term adverse effects on their emotions, social interactions and physical health, and posing considerable challenges to the children and their families (Rizwan et al., 2022).

The etiology of TD is complex and is often the result of the interaction of genetic, environmental and psychological factors during children’s development (Liu et al., 2020; Qi et al., 2019; Yagi et al., 2021). Among them, caregivers play a crucial role in the management of TD (Lee, 2022). However, long-term care responsibilities, insufficient social support, and concerns about the future development of children patients often subject caregivers to tremendous physical and mental stress (Travis & Juarez-Paz, 2020). Compared with caregivers of children with other chronic diseases, due to the particularity of TD symptoms, they often face more severe social pressure and psychological burden (Liu et al., 2023). Studies show that these pressures are closely related to the negative emotions of caregivers (Goussé et al., 2016), and may even affect the recovery and psychosocial functions of children patients (Banihani et al., 2025). Therefore, it is crucial to understand the emotional experiences and needs of caregivers of children with TD during the care process.

In recent years, the mental health of caregivers of children with chronic diseases has gradually attracted the attention of scholars (Holmes et al., 2024; Zonta et al., 2024). However, most of the studies on the emotions of caregivers of children with TD are cross-sectional studies, and qualitative research on their emotional experiences remains limited (Stewart et al., 2015; Wattanarojjanakit et al., 2023). Compared with quantitative research, qualitative research methods are more suitable for in-depth exploration of the challenges, difficulties and emotional experiences faced by caregivers (Jika et al., 2021). A deep understanding of these feelings can help medical staff implement targeted interventions, improve the mental health of caregivers, reduce related care obstacles, enhance care capabilities, and ultimately promote the recovery and growth of children patients.

Therefore, this study adopts qualitative research methods, aiming to deeply explore the emotional experiences of TD child caregivers and provide empirical evidence for formulating targeted intervention strategies.

Methods

Study Population

Participants were recruited at the psychosomatic medicine clinic of a hospital in Shandong Province from July to September 2025. To ensure the heterogeneity of participants in terms of demographic characteristics such as age, gender, education level, occupation and income, this study adopted a purposive sampling strategy with maximum variability. The sample size is determined based on data saturation, that is, no new topics appear during the interview process.

Inclusion criteria were: (1) parents of children meeting the DSM-5 diagnostic criteria for TD (American Psychiatric Association, 2013); (2) parents of children aged 3–12 years; (3) serving as the primary caregiver for at least three months; (4) caregivers under 65 years of age, alert, and able to communicate clearly.

Exclusion criteria were as follows: (1) caregivers currently receiving other psychological interventions; (2) caregivers with severe medical, surgical, or neuropsychiatric conditions; (3) caregivers with difficulties in reading or comprehension; (4) paid caregivers; (5) caregivers who withdrew during the study; and (6) children with life-threatening organic diseases.

A total of 13 caregivers were included. To maintain confidentiality, participants were anonymized and assigned codes (N1-N13). General demographic characteristics of the children and their caregivers are presented in Table 1.

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Table 1.

General Information of Study Participants (n = 13)

Caregivers									Patients
Number	Gender	Age	Residence	Relationship	Education	Occupation	Monthly income	Medical insurance	Gender	Age
N1	Female	29	City	Mother	Vocational college	Worker	3000–4999 RMB	Urban medical insurance	Male	4
N2	Female	33	Countryside	Mother	Vocational college	Worker	5000–7999 RMB	Rural medical insurance	Female	6
N3	Female	31	City	Mother	College diploma	Worker	5000–7999 RMB	Urban medical insurance	Female	6
N4	Female	36	City	Mother	Bachelor’s degree	Teacher	8000–9999 RMB	Urban medical insurance	Male	8
N5	Male	60	Countryside	Grandpa	High school	Farmer	Below 3000 RMB	Rural medical insurance	Male	5
N6	Female	41	Countryside	Mother	High school	Worker	3000–4999 RMB	Rural medical insurance	Male	7
N7	Female	35	City	Mother	Bachelor’s degree	Worker	8000–9999 RMB	Urban medical insurance	Female	5
N8	Female	35	Countryside	Mother	Vocational college	Farmer	Below 3000 RMB	Rural medical insurance	Female	11
N9	Female	43	City	Mother	College diploma	Medical staff	10000–14999 RMB	Urban medical insurance	Female	6
N10	Female	30	Countryside	Mother	Vocational college	Worker	3000–4999 RMB	Rural medical insurance	Male	9
N11	Female	29	City	Mother	College diploma	Unemployed	Below 3000 RMB	Urban medical insurance	Female	4
N12	Male	32	City	Father	College diploma	Worker	5000–7999 RMB	Urban medical insurance	Female	5
N13	Female	32	City	Mother	Bachelor’s degree	Company employee	10000–14999 RMB	Urban medical insurance	Male	4

Results

Discussion

This study employed a descriptive phenomenological approach to systematically collect and analyze the emotional experiences and caregiving challenges of primary caregivers of children with tic disorders. Through inductive thematic analysis, three core themes were identified: (i) multiple stressors, (ii) emotional and psychological distress, and (iii) caregiving challenges and coping strategies. These themes comprehensively reflect the diverse difficulties faced by caregivers during prolonged caregiving, including sustained physical and psychological strain, emotional distress, and limited coping strategies.

The findings indicate that primary caregivers of children with tic disorders commonly experience multiple burdens spanning physical, economic, medical, and family domains. Given the young age and low cooperation of children with tic disorders, daily care requires substantial time and energy. Moreover, because tic symptoms are easily influenced by environmental emotions (Ruhrman et al., 2023), caregivers must maintain a stable environment and deliberately suppress their own anxiety, presenting a calm exterior to prevent symptom exacerbation, which further increases physical and mental fatigue, consistent with previous studies (Johnson et al., 2023; Yang et al., 2019). Economically, high medical costs and income disruption due to caregiving place many families in a vicious “treatment-poverty” cycle, aligning with findings by Buckle et al. (Buckle et al., 2023). Additionally, scarcity of specialist resources and barriers to timely medical consultation pose significant challenges for caregivers seeking professional guidance, further confirming difficulties in the current healthcare environment (Walkowiak et al., 2024). According to Murray Bowen’s family systems theory (Calatrava et al., 2022), families function as interdependent systems, and interactions among members profoundly affect individual psychological states and behaviors. In this study, caregivers frequently needed to manage conflicts arising from differences in disease understanding, parenting approaches, and expectations among family members, which further diverted their attention and energy—a phenomenon consistent with prior research highlighting the negative impact of family conflict on chronic disease caregiving (García-Marín et al., 2023). These factors interact and collectively contribute to the heavy physical and psychological burden on caregivers (Wattanarojjanakit et al., 2023; Wellen et al., 2023).

Caregivers commonly experienced significant emotional and psychological distress. Concerns about the uncertainty of the disease, symptom recurrence, and comorbidities such as ADHD and OCD eroded caregivers’ psychological stability, with prolonged anxiety often accompanied by increased depressive symptoms (Fjermestad et al., 2024), echoing findings by Wellen (Wellen et al., 2023). As children reached school age, tic symptoms were frequently misunderstood by peers, potentially leading to social exclusion. This sense of stigma not only arises from external judgment but also from caregivers’ self-blame for perceived obstacles in their child’s social development, exacerbating psychological burden, consistent with prior studies (Suh et al., 2022). Notably, many caregivers attributed the disorder to their own parenting or genetic factors, resulting in persistent guilt and self-blame, consistent with Hu et al. (Hu et al., 2024). This reflects cognitive distortions stemming from a lack of scientific understanding of the disease, which can influence treatment decisions. Under such chronic stress, accumulated emotional distress sometimes led to heightened tension, sleep disturbances, and even suicidal ideation, underscoring the severity of psychological health risks.

Most caregivers in this study had limited educational backgrounds and insufficient professional knowledge of the disorder. They often resorted to online resources for self-education, yet the abundance of inconsistent and low-quality information frequently amplified catastrophic thinking and anxiety, consistent with Liu et al. (Liu et al., 2024). Caregivers’ attitudes toward their children gradually shifted from “achievement-oriented” to “health-oriented” and from “authoritative control” to “collaborative management,” a pattern commonly observed in families dealing with chronic pediatric conditions (Dandy et al., 2024; Spurr et al., 2023). However, this shift often represents passive adaptation to perceived helplessness rather than a rational cognitive restructuring, implicitly limiting the child’s developmental potential. Furthermore, most caregivers lacked effective means for emotional release (Brandão et al., 2024); in this study, caregivers primarily relied on brief venting or avoidance to manage negative emotions, without structured social or professional psychological support. While such strategies can temporarily stabilize emotions, unresolved negative emotions may accumulate over time, increasing the risk of depression and anxiety.

Given the multifaceted challenges faced by caregivers of children with tic disorders, constructing effective support systems is crucial. Future interventions should leverage these findings to develop targeted support strategies. For instance, patient-centered care could be extended to family-centered care, integrating routine psychological assessment of caregivers and timely counseling for those experiencing emotional crises. Improving access to specialist resources and reducing the burden of cross-regional medical visits are also essential. Digital platforms, such as official hospital WeChat accounts and short-video services like Douyin, could disseminate systematic knowledge, offer Q&A sections with professional guidance, and provide accurate caregiving resources, reducing uncertainty and fear among caregivers. Additionally, school- and community-level health education can enhance public awareness, reduce stigma, and foster a supportive social environment. Policy measures could include expanding insurance coverage for long-term treatment of tic disorders and offering flexible employment support to parents who interrupt work, alleviating financial and caregiving burdens.

This study has several limitations. First, participants were recruited from the outpatient department of a single hospital’s psychosomatic medicine clinic, and the sample size was relatively small, limiting generalizability across different regions and cultural backgrounds. Second, most participants were mothers, with few male caregivers included, potentially constraining understanding of gender-specific caregiving experiences. Future research should expand sample diversity, including more male caregivers, to provide a more comprehensive understanding and inform tailored interventions.

Conclusion

The findings indicate that primary caregivers of children with tic disorders experience significant gaps in disease knowledge, emotional regulation, and coping strategies. Caregivers commonly face physical and psychological stress, disease-related anxiety, stigma, and self-blame, yet lack systematic psychological support and caregiving guidance. These results underscore the urgent need for evidence-based education and psychological interventions for caregivers. Optimizing family caregiving models, establishing information support platforms, and promoting inclusive social education can enhance caregiving quality and improve recovery outcomes for children.