Attributions and Affiliate Stigma in Caregivers of Children with Cleft Lip and/or Palate: A Qualitative Study in China

Background and Purpose: Previous studies have predominantly addressed the public stigma experienced by parents or caregivers of children with Cleft Lip and/or Palate (CL/P), highlighting issues such as defamation, exclusion, and accusation. However, the phenomenon of self-stigma, termed "affiliate stigma," among caregivers has been insufficiently explored. Additionally, the stigma experienced by caregivers of children with CL/P is inadequately understood due to cultural variations in the perception and understanding of CL/P. The influence of traditional religious and philosophical beliefs on Chinese attitudes toward birth defects or disorders also remains poorly characterized.

This qualitative study seeks to fill these gaps by enhancing understanding of self-stigmatization experiences through the lens of the attribution model. It aims to provide evidence for interventions supporting caregivers of children with CL/P in China. By examining caregivers’ attributions regarding CL/P, describing the manifestations of affiliate stigma, and identifying potential protective factors against this stigma, the study addresses research questions concerning how caregivers' attributions impact self-stigmatization.

Methods: A sample of 20 caregivers of children aged 5 to 12 years with CL/P from Southwest China was recruited through maximum variance sampling, based on variables such as child age, cleft type, gender, and caregiving role. The sample comprised predominantly low-income caregivers (60%), including 12 mothers, 6 fathers, and 2 grandmothers, of whom 3 were from ethnic minority backgrounds. Face-to-face semi-structured interviews were conducted to gather data on participants’ experiences in caring for a child with CL/P, focusing on their attributions and stigma experiences. The interviews were audio-recorded, transcribed, and analyzed using thematic analysis in NVivo software. Themes were developed based on the Attribution model, centering on caregivers' cognitive, affective, and behavioral responses to stigma.

Results: The analysis identified three types of attributions made by caregivers regarding their children's CL/P, two consequences of self-stigma, and four pathways leading to these consequences. Internal attributions—including cultural taboos, divine punishment, and physical causes—led to feelings of self-blame, guilt, and self-doubt among caregivers. Conversely, external attributions, such as fate and environmental pollution, were associated with positive psychosocial responses and reduced self-stigma. Caregivers exhibiting dual attributions displayed a range of dynamic behaviors, from withdrawal and isolation to proactive attempts to mitigate stigma. Positive buffering factors, such as support from significant others, surgical treatment, the positive character of children, and caregivers' self-acceptance, were identified as moderating influences against affiliate stigma.

Conclusions and Implications: This study elucidates the complex interplay between attributions, affiliate stigma, and mitigating factors among caregivers of children with CL/P. The findings highlight the significant role of cultural beliefs, social support, and interventions in shaping caregiver experiences. A deeper understanding of these dynamics can inform targeted interventions aimed at reducing self-stigmatization, enhancing caregiver well-being, and improving outcomes for children with CL/P. These insights are valuable for clinical practice, policy development, and future research in the field of pediatric craniofacial care.