Predictors of Caregivers’ Satisfaction with the Management of Children with Autism Spectrum Disorder: A Study at Multiple Levels of Health Care

Abstract

Background: Caregivers are the initial gatekeepers in the health care management of children with autism spectrum disorder (ASD). Methods: This cross-sectional study aimed to determine the factors associated with caregivers’ satisfaction with different levels of health care services in managing children with ASD in Kelantan. The satisfaction scores of 227 main caregivers of confirmed ASD children were assessed with a modified Parent Satisfaction Scale (PSS) questionnaire. Results: The analysis showed that caregivers who waited longer for a doctor’s consultation in primary care had a reduced PSS score, whereas caregivers who were satisfied with the waiting time in primary care had higher PSS scores. At the secondary care level, caregivers who possessed at least a diploma had reduced PSS scores, whereas caregivers who were satisfied with both doctors’ consultation times and occupational therapy appointments had higher PSS scores. At the tertiary care level, caregivers with an underlying medical problem and who had children undergoing occupational therapy for two months or more had reduced PSS scores. Nevertheless, the analysis showed that caregivers who were concerned with their children’s sleeping problems, who had been informed about parental support, who were satisfied with speech and occupational therapy appointments, who were satisfied with waiting times at tertiary care clinics, and who were satisfied with their doctor’s knowledge and experience had higher PSS scores. Conclusions: This study elucidated the importance of understanding caregivers’ satisfaction in attaining care for their ASD children and highlighted the need to promote factors that would increase caregivers’ satisfaction with current ASD services.

Evaluating Parents’ Concerns, Needs, and Levels of Satisfaction with the Services Provided for ASD Children in Saudi Arabia

“…Likewise, an early diagnosis can significantly influence parents' responses and enable them to better cope with their children's conditions. 37,38 Similarly, the parents of children who had attended two SLT sessions per week reported considerably better satisfaction levels, which could be attributed to the improvements noted in their children's conditions-a finding consistent with that of Adib et al 31 In a study conducted on ASD children who have speech sound disorders, the greatest improvement was observed when the children received an average of 2.57 SL sessions per week for a period of 6 weeks. 39 Intensive interventions can also improve communication and daily social skills, thereby resulting in ASD children's improved social behaviors.…”

“…In this study, almost two-thirds of the parents reported that their children were diagnosed with ASD at an average age of less than 4 years, matching the findings of different studies. 29,30 This age is considered early compared with those found in other studies [31][32][33] . Notably, parents who received an early diagnosis of ASD for their children (less than 4 years old) had significantly higher levels of satisfaction with the SLS provided than those whose children were diagnosed at later ages.…”

Quality of Life and Child’s Autism-Specific Difficulties among Malaysian Main Caregivers: A Cross-Sectional Study

“…In this study, main caregivers were defined as either fathers or mothers who were mainly responsible for caring and providing the needs for their children with ASD and who were the main people responsible for caring for the child and who were actively engaged in providing care and the needs of the child [ 11 ].…”

“…The dynamic nature of the challenges faced by caregivers of children with ASD puts them at a greater risk for a negative quality of life (QoL). When the diagnosis of ASD is initially made, caregivers have to learn to accept, adapt, and cope with new information and needs [ 11 ]. When the child reaches the ages between four and eight-years-old, caregivers are challenged with new co-morbidities and the child’s increased levels of emotional or behavioural symptoms [ 12 ].…”

When More Is Too Much: Compound Caregiving, Barriers to Services, and Service Support for Older Families of People With Disabilities

“…Past I/DD research also demonstrated that the lack of available treatments was a barrier to service use (Brown et al, 2018;Heller et al, 2018;Samuel et al, 2012). While past research documented parental frustration with the availability and accessibility of services for children with disabilities (Nik Adib et al, 2019;Vohra et al, 2014), we know little about the differences in service navigation by older compound and noncompound caregivers. Even in life-limiting conditions without known cures, social convention seeks out supports to improve health and well-being (LaDonna et al, 2017).…”