METHOD: Participants (N = 110) filled-in the Affiliate Stigma Scale, the Caregiver Burden Inventory and the CarerQOL scale.
RESULTS: Parents reported low scores on stigma and fair levels of stress and quality of life, indicating that parents do not feel stigmatized by affiliation with a child with ASD nor are they stressed from affiliate stigma. After controlling for demographic factors, both the relationships of affiliate stigma with stress and with quality of life were weak, indicating that stigma may have little to no effect on stress and quality of life.
CONCLUSION: Cultural and religious beliefs may play a part in the acceptance of a child's condition, resulting in less impact of stigma on the parents.
MATERIALS AND METHODS: This scoping review followed the rigorous methodological framework; searched Medline (via OVID and EMBSCO), Scopus, and Web of Science; and selected studies relevant to validated instruments used to evaluate the PES and ESS among parents of DHH children below 6 years old. Before selecting and reviewing relevant articles, two reviewers independently assessed article titles and abstracts from the data sources. Two reviewers verified half of the first reviewer's extracted data.
RESULTS: Overall, 3060 articles were retrieved from the database search, and 139 were selected for full-text review following title and abstract reviews. Ultimately, this study included 22 articles. Among them, 23 and 12 validated instruments, most of which are generic measures, were used for assessing PES and ESS, respectively. Three condition-specific instruments were identified and designed to be administered following cochlear implantation surgery.
CONCLUSIONS: This study revealed that healthcare professionals who interact with parents of DHH children lack the necessary instruments, particularly for parents of children undergoing cochlear implantation surgery. Therefore, it is necessary to develop condition-specific instruments for parents who consider cochlear implantation for their children.
METHOD: Surveys (Study 1) and semi-structured interviews (Study 2) were used to collect data. Thirty-eight respondents completed the Affiliate Stigma Scale (ASS), Caregiver Burden Inventory (CBI), and Care-related Quality of Life (CarerQol) scales (GMFCS). Eleven respondents took part in semi-structured interviews, which were then thematically evaluated.
RESULTS: Parents did not feel stigmatized because they had a child with CP. However, parents needed some form of short-term relief from caregiving. After controlling for demographics, high stress respondents experienced high affiliate stigma whereas low stress respondents had better quality of life. Although the respondents with less stigma had a better quality of life, this effect was moderate. Three major themes emerged from the interviews.
CONCLUSION: Counseling, support groups, and helper services should be offered to parents. Also, healthcare professionals participating in CP rehabilitation, community-based rehabilitation, and health institutions should be educated on how to better help parents of children with CP.