Caregivers’ perceptions of the oral-health-related quality of life of children with special needs in Johannesburg, South Africa

Abstract

Background:The prevalence of dental caries and its effect on the oral-health-related quality of life (OHRQoL) of children with special needs (CSNs) have not been established in South Africa. Aim:The study aimed to assess how caregivers of CSNs who attended Down Syndrome Association outreach sites in Johannesburg, South Africa, perceived the contribution of OHRQoL to the quality of life of these children. Setting:The study was conducted at Down Syndrome Association (DSA) outreach sites in Johannesburg. These sites cater for children with several types of disabilities including cerebral palsy, hydrocephalus, autism, epilepsy and developmental delays. The association schedules and facilitates support group meetings for the caregivers of children with Down syndrome and other disabilities. These meetings are held at the outreach sites that are located at different district hospitals and community health centres in Johannesburg and are co-facilitated by the association's outreach coordinator together with a team of physiotherapists, occupational therapists and speech therapists. Methods:This cross-sectional study was composed of a convenient sample of 150 caregiver and child pairs from five outreach sites during January -June 2015. The shortform Parent-Caregiver Perception Questionnaire (P-CPQ) was used. The caries status of the children was assessed using the decayed, missing and filled teeth (dmft/DMFT) indices (whereby dmft or DMFT stands for decayed missing filled teeth in primary dentition [dmft] and in permanent dentition [DMFT]) based on World Health Organization guidelines. Results:The mean age of the caregivers was 39.52 years (standard deviation [SD] 9.26) and 8.72 years (SD 6.07) for the children. The mean P-CPQ score was 12.88 (SD 12.14). All the caregivers stated that dental caries had a negative impact on the OHRQoL of the CSNs. However, 60% of caregivers stated that an oral condition had no impact on the child's overall well-being. The majority (56.7%) of the caregivers rated their children's overall oral health status as average and only 12% reported the oral health status to be poor. There was a high prevalence of untreated caries among the CSNs regardless of the type of disability. Conclusion:All the caregivers stated that dental caries had a negative impact on the OHRQoL of the CSNs. However, they appeared to have contradictory perceptions of the oral health needs or status of their children.

Care Coordination Needs of Families of Children with Down Syndrome: A Scoping Review to Inform Development of mHealth Applications for Families

“…Articles were evenly distributed between qualitative and quantitative study designs. Fourteen studies were qualitative [ 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 ], eleven were quantitative [ 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 ], and five were mixed methods [ 20 , 47 , 48 , 49 , 50 ]. Investigators in six studies completed secondary analyses, four using data from the National Survey of Children with Special Health Care Needs (NS-CSHCN) [ 51 , 52 , 53 , 54 ], one completing a chart review [ 7 ], and one using the Intellectual Disability Exploring Answers (IDEA) database [ 55 ].…”

“…Additionally, two studies used the Oral assessment in DS Questionnaire [ 37 , 44 ]. The Emotionality, Activity, Sociability Survey, Family Adaptability and Cohesion Evaluation Scale, the brief Family Assessment Measure (FAM), Family Support Scale (FSS), Family Coping Index (FCI), Family Environment Scale, Family Index of Regeneratively and Adaptation (FIRA-G), Parent-caregiver Perception Questionnaire (P-CPQ), Perceived Social Support Scale (PSSS), Family Assessment Device (FAD), Beck Depression Inventory (BDI), Index of Social Competence (ISC) and Family APGAR were each used in one study [ 36 , 38 , 40 , 43 , 56 , 57 ]. Nine studies used measures generated by the investigators to assess caregiver needs [ 22 , 39 , 42 , 43 , 45 , 46 , 47 , 49 , 50 ].…”

“…Descriptive statistics were reported for all eleven quantitative studies, as well as the five mixed-methods studies [ 20 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 ]. Twelve of the studies including quantitative data completed tests of association or correlation [ 20 , 37 , 38 , 40 , 41 , 42 , 43 , 44 , 45 , 48 , 49 , 50 ]. Frequency counts were employed by five studies as part of the analysis [ 20 , 39 , 44 , 45 , 47 ].…”

“…Several studies included caregiver dyads within the sample but did not analyze the data as dyads [ 27 , 32 , 34 , 37 ]. One study focused on caregiver-and-child dyads; however, health-related quality-of-life data were only collected from mothers and were linked to the child’s dental-health physical exam findings [ 40 ]. While the focus of this scoping review was families and caregivers of children with DS, several studies also included healthcare providers, with 72 provider respondents.…”

“…While family factors were addressed across thirteen studies [ 27 , 28 , 31 , 32 , 34 , 36 , 38 , 40 , 42 , 48 , 50 , 56 , 57 ], three factors of family functioning were identified as playing a role in care coordination, resiliency, advocacy, and uncertainty [ 28 , 42 , 48 ]. Families described care coordination across providers as one way they were able to advocate for their child, and this advocacy most common occurred in healthcare and school settings [ 28 , 32 ].…”