Dataset Information

Internalization of stigma among parents of children with autism spectrum disorder in Nigeria: a mixed method study

ABSTRACT:

Background

Autism Spectrum disorder (ASD) has uniquely stigmatizing aspects because children with ASD have no physical markers of their condition. Parents are usually blamed and judgment from others is often internalized (felt stigma).

Aim

This study was conducted to determine knowledge about ASD, negative experiences (enacted stigma), internalization of stigma (felt or self stigma) and its correlates among parents of children with ASD in Lagos, Nigeria.

Methods

This was a cross-sectional study of 230 parents in Lagos, Nigeria employing mixed-method data collection methods. Quantitative data were collected using a structured interviewer-administered questionnaire and analyzed with Epi- Info™ version 7.0 statistical package. Data were summarized with proportions, mean and standard deviation. Chi square and Spearman’s correlation tests were done, and the level of significance was pre-determined at 5% (p < 0.05). In-depth interviews were also conducted among six parents to further explore the topic. The interviews were analyzed narratively.

Results

The proportion of mothers and fathers were 175 (76.1%) and 55 (23.9%) respectively. The mean age of respondents was 42 ± 8.5 years. Overall knowledge of ASD was very poor as only 3(1.3%) had good knowledge. Overall, 122(53%) usually had negative experience of parenting a child with ASD (enacted stigma), mothers (17.1%) more than fathers (9.1%). Majority 192(83.5%) internalized stigma. There was a low–moderate correlation between ‘enacted’ stigma and ‘internalized’ stigma (ρ- 0.400, p < 0.001). From in-depth interviews, many parents revealed that their child’s condition had negative effects on the family. Many also recounted negative experience of stigma.

Conclusion

Overall, parents of children with ASD had poor knowledge of the condition. Majority internalized stigma and this increases with negative treatment from others. Parents should be properly educated about ASD. Community-based education to increase awareness about ASD in addition to encouraging people to show empathy and reduce stigmatizing behaviour towards parents of children with ASD are recommended.

Supplementary Information

The online version contains supplementary material available at 10.1186/s40359-021-00687-3.

SUBMITTER: Oduyemi A

PROVIDER: S-EPMC8607563 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:BackgroundResearch shows that people with autism spectrum disorder and their families often experience social stigma. The internalization of social stigma can lead to the occurrence of self-stigma, understood as an internalized cognitive-affective self-directed and rigid process that results in individuals agreeing with stigmatizing opinions and applying them to themselves. Experiencing self-stigma can lead to a cognitive fusion with negative thoughts-especially those about oneself. Previous studies show that self-compassion reduces feelings of suffering, shame and self-stigma in a group of parents of children with autism spectrum disorder. The aim of this study was to test the relationship between self-stigma and cognitive fusion among parents of children with ASD. The moderating role of self-compassion as a protective factor was also verified.MethodsThe following questionnaires were used: Perceived Public Stigma Scale, Perceived Courtesy Stigma Scale, Self-Compassion Scale-Short Form, Cognitive Fusion Questionnaire, and Depression, Anxiety and Stress Scale. The study included 233 Polish parents of children with autism spectrum disorder (including 218 women).ResultsThe results showed a positive correlation between fusion and both affiliate (r = 0.31, p < 0.001) and public stigma (r = 0.33, p < 0.001). Fusion and self-compassion were significant predictors of affiliate stigma. Self-compassion moderated the relationship between fusion and depression (β = -0.11, p < 0.05) and the relationship between fusion and stress (β = -0.11, p < 0.05). Cognitive fusion with negative beliefs about oneself can contribute to self-stigma. Defusion-oriented actions are an opportunity to distance oneself from emerging thoughts and eliminate their negative consequences. Self-compassion manifests itself in a compassionate and accepting attitude towards oneself and improves the individual's well-being. Actions taken to strengthen the indicated factors could contribute to a better quality of life of parents of children with ASD.

Project description:Background:Children diagnosed with autism spectrum disorder (ASD) have social and cognitive disabilities. For parents, these behaviors can lead to humiliation, social exclusion, and isolation. Stigma is a problem that not only may affect the individual with high functioning autism, but has the potential to extend to their family as well. Indeed, research indicates that the parents of children with disabilities (including ASD) commonly experience stigmatizing reactions from others. Aim of work:To determine the prevalence of self and enacted stigma among parents of ASD children from Riyadh, Saudi Arabia, and recognize possible risk factors and causes of stigmatization. Material and methods:An observational cross-sectional study involving the parents of ASD children from Riyadh, Saudi Arabia. About 163 participants were included from the Centre for Autism Research (CFAR) at King Faisal Specialist Hospital & Research Centre (KFSH & RC) in Riyadh. The primary material used for data collection was a five-point scale questionnaire developed by the investigator. The questionnaire consisted closed ended questions related to the participants' demographic data, autistic child, family life, resources, and social experiences as a parent. The collected data were analyzed using descriptive statistics and appropriate statistical analysis, using Statistical package for the social sciences (SPSS), version 22. The level of significance was P value?<?.05. Results:The findings of this work indicated that 55 (33.7%) of the parents scored more than 3 in answering questions related to felt stigma; 82 (50.3%) were fathers. On the other hand, 108 (66.3%) did not feel stigmatized being a parent of autistic child. Forty-two (25.8%) of the parents scored more than 3 in answering questions related to enacted stigma, whereas 121 (74.2%) did not face enacted stigmatization being a parent of autistic child. There was a strong tendency for mothers (41, 75%) to feel more self- and enacted stigmatized than fathers (P?<?.05). Moreover, the gender of the autistic child, consanguinity, severity of the ASD, and the monthly income of the family showed no significant difference in the parents who scored more than 3 for felt- or enacted stigmatization (P?>?.05). Conclusion:Among participated parents of children with ASD in Riyadh, Saudi Arabia, 33.7% of them experienced stigmatization, and mothers felt more self- and enacted stigmatized when compared to fathers. Public awareness among people in Saudi Arabia have been increased and, thus, negative stigmatization has decreased among parents in the country. A high level of felt stigma suggests the need for psychological intervention for the family to help cope with this new situation. A higher level of enacted stigma suggests the need for their rights (individuals with ASD) and increased awareness in the society. It is recommended that further research is needed in different centers in Riyadh and other regions of Saudi Arabia to investigate the prevalence of stigma in parents of autistic children.