A quantitative and qualitative study in the oral health knowledge, attitudes, practices and perceived barriers faced by caregivers of individuals with special need in Selangor

Caregivers play an important role in the quality of life of individuals with special needs (IWSN). Therefore, understanding caregiver’s knowledge, attitudes and practices including challenges is vital to improve health outcomes. This research aimed to investigate caregivers oral health knowledge, attitudes and practices (KAP) for themselves and their IWSN, determine the current and preferred methods of oral health education and explore the barriers caregivers face in Selangor. Data was collected from 1 community-based rehabilitation centres in each of the 9 districts in Selangor. This 2- part study consisted of a quantitative portion (validated bilingual-questionnaire on the oral health KAP (caregiver and IWSN) and information on methods of learning caregivers have used and preferred methods. Open-ended questions discussing dental services provision to IWSN was also explored. In the qualitative portion, focus group discussions involving 3 to 5 participants, was done where barriers faced by caregivers were discussed until saturation was achieved. The data was then analysed statistically (quantitative) and thematically (qualitative) to interpret findings. Results of the quantitative study achieved 71% (n=195) of the intended sample size. Sociodemographic findings showed that majority of participants had good oral health knowledge and practices but poor attitudes. In this study, females performed better than males in all three KAP aspects. Malay participants had statistically better knowledge scores than Chinese participants while caregivers caring for more than 5 years had significantly better attitude scores than those caring for shorter periods. Oral health practices for the IWSN were not ideal with shorter periods of brushing but inappropriate timing secondary to uncooperative behaviours, communication issues and gingivitis and halitosis. As for methods of learning, most practiced trial-and-error followed by training from the centre. Also, majority or caregivers felt training was necessary and preferred audio-visual and practical means. From the open-ended questions, themes derived pertaining to the dental services for IWSN discussed issues with healthcare services, accessibility and awareness of the community to these dental services for IWSN. As for recommendations, caregivers suggested specific facilities at hospitals, treatment at the centres by special care dentists as well as schemes for treatments to be done in private facilities, financial aid for the unseen cost of dental treatment like transportation and better training for undergraduate dentists to be willing and equipped to manage IWSNs. As for results of the thematic analysis, 32 participants were involved in the focus group discussions and the main themes identified were related to healthcare services both from the infrastructure and staff, support systems like family, government, within the centre from the community, caregivers' personal factors like stress and guilt, and IWSN’s behaviour issues. From the results of the study, statistical significant findings related to gender were noted for KAP due to the prevalence of women in caregiving roles. As for knowledge, Malays performed better due to the lack of practice of the Malay language in lower income Chinese communities. Poor attitudes of caregivers were related more to a lack of symptom and time which was secondary to the burden of care. Most barriers experienced pertained to the lack of preparedness of healthcare facilities and staff as well as social support which worsens anxiety of mortality and guilt ultimately, impairing health of caregivers conclusively effecting the IWSN negatively.