Abstract:
6.1. Summary of the Study (English version)
ASD is characterized by abnormalities in reciprocity and interactive communication, stereotypical behavior, and activities interfering with life routines (APA, 2013). Empirical studies were conducted for re-evaluation of children with ASD in Rwanda (chapter II/study 1), identification of challenges and coping strategies for parents and clinicians in caring for Children with ASD (chapter III/ study 2), as well as Pilot and feasibility Randomized controlled trial (chapter IV/ study 3).
Study 1 research questions of the first objective were; does a difference exist between the means scores of participants groups (mothers and children with ASD) relating to socio-demographic factors, achieved on CARS-2 and CASD? The second research question of the second objective was; does CARS-2 and CASD reliably assess ASD symptoms? While the research question of the third objective was “Does childhood rating scale version 2 correlate with the checklist autism rating scale in the assessment of children with ASD in Rwanda?
A convenient sampling strategy was used to achieve a total sample of 94 children with ASD reassessed by the principal investigator (PI) to confirm the ASD diagnosis. A socio-demographic form was utilized to yield socio-demographic data while CARS-2 and CASD were applied for the diagnosis of ASD symptoms by the principal investigator. For analysis of data, descriptive statistics, the independent- samples t-tests and analysis of variance (ANOVA) and the Pearson’s r were used. Parents of children with ASD had signed written informed consent prior to the research. Results of the study 1 revealed, firstly, no association between socio-demographic factors and the severity of ASD symptoms. Only birth condition and mothers age at birth child were associated with ASD symptoms. Secondly, positive large correlation between score achieved on CARS-2 and CASD indicating that an increase in severity of ASD symptoms as measured by CARS-2 results in an increase in severity of ASD symptoms as measured by CARS-2. These results are consistent with studies conducted that indicated correlation between CARS-2 and CASD.
The study 2 research questions were; (1) What are challenges faced by parents of Children with ASD and clinicians caring for the Children with ASD in Rwanda? (2) What are coping strategies adopted by parents of Children with ASD and clinicians in managing Children with ASD in Rwanda?
This study was conducted on twenty (n = 20) parents of children with and twenty (n =20) clinicians caring children with ASD. The researcher conducted an in-depth semi-structured, interview with parents of Children with ASD and clinicians to collect data. NVivo12 software program (QSR International) was utilized to analyze data. The study 2 results revealed, firstly, a number of challenges faced by ASD mothers pertaining the child’s ASD condition, which were; lack of knowledge, financial and caring burden, stigma and frustration, and secondly, parents’ coping strategies which consisted of self-informing, respite services, reliance on supernatural power, acceptance and consultation of extended family and clinicians at health facilities. On the part of clinicians, the study reported firstly, their obstacles in managing Children with ASD which were; lack of knowledge, overwork, social interaction barriers with Children with ASD, and secondly, their coping strategies in managing Children with ASD, which were; Self-informing and team work with colleagues. The results are consistent with studies conducted by other authors in previous studies. However, the current study brings new information into the literature on involvement of the extended family as a coping strategy, represented by grandparents or any important figures in the extended family, namely the chief of family where relevant.
Finally, study 3 is a feasibility study which targeted on adapting the existing evidence based intervention for the management of Children with ASD developed in India (Brief parent mediated intervention for children with ASD)(Manohar et al., 2019). The adapted model was Family Focused Training therapeutic model for caring children with ASD in Sub-Sahara Africa (FASSA). The research questions were; (1) What is the attrition and attendance rate of families during the family focused training care model for children with ASD in Sub Sahara Africa (FASSA) in Rwanda? (2) Are families compliant with FASSA in Rwanda? (3) Is there a difference in symptoms reduction between the children who receive FASSA in Rwanda and those who do not receive the FASSA in Rwanda?
The study 3 used interventional study design, a clinical trial which had parallel assignment, consisting of 21 children with ASD in intervention group and 21 children with ASD in the control group. Confirmed Children with ASD, 4-12 years from study 1, and their families who were available and consented to participate in this study, were randomly assigned to 2 groups. Both groups were under TAU where it was applicable. The sample size of 42 children with ASD was obtained by simple random sampling. Measures of feasibility and acceptability were (1) Home logbook, (2) SRS and CORS to assess family compliance (3) CARS-2 and CASD to evaluate reduction of ASD symptoms. The FASSA was a two weekly based training sessions (session1: psychoeducation; session 2: Joint attention, session 3: Imitation; session 4: social skills and session 5: Adaptive skills) conducted by the therapist (PI) during 3 months.
The study 3 demonstrated high participant’s compliance with treatment as indicated by the attrition rate of 2.38% (n=1), overall attendance of 98.5%, training sessions completed 100% and the average parents training hours of 13.4hrs/14hrs (95.7%). This compliance was measured by SRS during the participants’ training sessions and the report on children outcome measured by CORS showed some improvement with time progression. Moreover, study 3 presented a reduction in ASD symptoms scores across the three periods, the baseline, end therapy and follow up assessments with large effect size of .54 on CARS-2 and large effect size of .58 on CASD. The difference between the effectiveness of the two groups together with a very large effect size was observed, i.e., .17 for CARS-2 and large effect size of .21 for CASD.
The present study displayed family compliance with the intervention program and large numerical changes in scores achieved on CARS2, indicating significant improvement on children outcomes and symptoms which could have motivated and increased parental engagement. These findings are consistent with different studies on brief intervention for Children with ASD conducted in natural environments. Family intervention gives family members opportunities to learn about ASD, to contribute towards the caring of the child with ASD and integrate these acquired skills into family routines. This leads to improvement of ASD symptoms and related stress among family members. The overall limitations of the present dissertation included small sample size which does not allow the study to generalized. Also, participants (parents) might be biased due to psychological and emotional status and their expectations they may have to any initiative for their children.
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