The experience of Singaporean caregivers with a child diagnosed with autism spectrum disorder and challenging behaviours

Abstract

This qualitative study presents an in-depth and idiographic analysis of the lived experience of parent-caregivers with a child diagnosed with autism spectrum disorder (ASD) who exhibits challenging behaviours. Semi-structured interviews were conducted with six parents of children with ASD and who met the Child Behaviour Checklist for Ages 6-18 (CBCL/6-18) Total Problems T score of 60 and above. The interviews were conducted at a child and adolescent psychiatry clinic in Singapore. Transcripts were analysed using interpretative phenomenological analysis. Two dominant themes emerged: sense of responsibility and renewed appreciation of self. The caregivers' sense of responsibility not only encompassed parental duty, spousal duty but also duty to the community. Through the process of meaning making and coordinating actions with their child, spouse and social relations, over time the caregivers developed a deeper appreciation of their personal strengths and resourcefulness. The findings suggest that clinical practice and future research would benefit from a family resilience perspective in understanding caregivers' experience.

Parenting Stress and Resilience in Parents of Children With Autism Spectrum Disorder (ASD) in Southeast Asia: A Systematic Review

“…Remarkably, more than half of the total reviewed studies were found to also investigate coping strategies/mechanism among parents of children with ASD (Liwag, 1989 ; Foronda, 2000 ; Ting and Chuah, 2010 ; Callos, 2012 ; Sian and Tan, 2012 ; Resurreccion, 2013 ; Wahyuni, 2013 ; Wisessathorn et al, 2013 ; Foo et al, 2014 ; Xue et al, 2014 ; Lai et al, 2015 ; Quilendrino et al, 2015 ; Roffeei et al, 2015 ; Santoso et al, 2015 ; Siah and Tan, 2015 , 2016 ; Chong and Kua, 2016 ; Ilias et al, 2016 ). This focus area suggests that even within the SEA region, there is awareness for the need to inclusively discuss coping strategies for parents of children with ASD as opposed to merely focusing on intervention strategies for the child diagnosed with ASD.…”

“…Social support . Across the studies, social support was found to be a coping mechanism that was frequently reported in easing parenting stress (Liwag, 1989 ; Foronda, 2000 ; Ting and Chuah, 2010 ; Callos, 2012 ; Moh and Magiati, 2012 ; Yeo and Lu, 2012 ; Wahyuni, 2013 ; Foo et al, 2014 ; Ha et al, 2014 ; Xue et al, 2014 ; Roffeei et al, 2015 ; Santoso et al, 2015 ; Chong and Kua, 2016 ). Specifically, social support was attained from numerous sources, which included support from the immediate family, schools, families of other children with ASD, professionals, and/or extended family members (e.g., Foronda, 2000 ; Xue et al, 2014 ; Santoso et al, 2015 ; Chong and Kua, 2016 ).…”

“…In particular, unlike the research by Xue et al ( 2014 ), the research by Foronda ( 2000 ) reported that parents drew less social support from extended family members, specifically, spouses' relatives (in-laws). On the other hand, spousal relationship itself was found to be an important source of social support (Foronda, 2000 ; Foo et al, 2014 ; Santoso et al, 2015 ; Chong and Kua, 2016 ), and was found to be a cross-cultural factor that significantly predicted parenting stress and psychological distress among parents of children with ASD in Malaysia as well as in China (Yeo and Lu, 2012 ).…”

How do Parents Manage Irritability, Challenging Behaviour, Non-Compliance and Anxiety in Children with Autism Spectrum Disorders? A Meta-Synthesis

“…Parents reported adjusting expectations depending on the child’s mood (e.g., Larson 2006 ; Foo et al 2015 ). For example, after a day at school, parents reduced demands to allow for the fact that the child’s energy levels were depleted (Fletcher et al 2012 ).…”

Caregiving for individuals with neurodevelopmental disability-influence of implicit attitudes and affiliate stigma on expressed emotions

“…The discrepancy between the tolerant attitude that is publicly promoted and the prejudice that is held by individuals towards NDDs may come from ignorance, as well as preexisting culturally-normative perceptions about and attitude towards individuals with disabilities. Prior to the creation of the enabling masterplan, little has been known and done for children with NDD (Foo, Yap, & Sung, 2015;Walker & Musti-Rao, 2016). Little is known about the long-term feasibility of such initiatives as their success thus far is based on a small pool of caregivers who were not previously exposed to NDD conditions and had minimal contact with other caregivers in the NDD community.…”