Assignment Task
Background
The pleasure of birthing and observing a child grow is rewarding to parents (Akta? & Ayd?n, 2019; Howarth et al., 2019; Ruthven et al., 2018). However, sorrow sets in upon noticing delays and or failure of the child to attain appropriate developmental milestones (Lopez et al., 2018; Samadi, 2020). This is true with children diagnosed with autism spectrum disorders (ASD) (Padden & James, 2017). The ASD global phenomenon manifests with impairments in initiating, sustaining, and comprehending relationships (Heys et al., 2018); and the “nonverbal communicative behaviours used for social interaction” (American Psychiatric Association, 2013, p.70).
A recent global estimate described an average ASD prevalence of about 1 in 270 people with substantial variances across studies (WHO, 2021). Although studies on ASD in low-and-middleincome countries are scanty (LMICs), results from hospital and population-based studies reveal higher numbers than reported (Abubakar et al., 2016; Onaolapo & Onaolapo, 2017). Uganda, limited data from research studies on ASD exist and is arguably lacking with limited publications (Kakooza-mwesige et al., 2014). However, a recent Ugandan study on prevalence of ASD revealed a 45% prevalence (Arinda et al., 2021), compared to an estimated global prevalence of 1- 2% among children (Heys et al., 2018). The limited data on ASD in Uganda is similar to other LMICs (Abubakar et al., 2016; Heys et al., 2018). Worse still, no such studies have explored the subjective experiences of crisis among families of children with ASD, their meanings, and available social support. This makes management of symptoms and policies on ASD challenging to families.
Parenting children with ASD is associated with a significant long-term impact on the wellbeing of families associated with high levels of pain, tension, shame, and economic pressure (Alon, 2019; Pepperell et al., 2018). This is attributed to clinical symptoms including substantial impairments in language, social communication, and atypical behaviors that may require life-long care and support (Alon, 2019; Hyman et al., 2021; Kogan et al., 2021). High levels of prolonged pressure precipitate the development of crises especially behavioral crises (Tonello et al., 2018; White et al., 2012). In families, a crisis may develop because caregivers face problems that
overwhelm their problem-solving and coping skills resulting in destabilization (Woolley, 1990).
Despite the crises associated with ASD, the availability of social support to families during such times is considered a protective factor (Pepperell et al., 2018).
There’s no available research in Uganda describing the forms and meanings of these crises (Arinda et al., 2021; Heys et al., 2018; Kakooza-mwesige et al., 2014). Despite the fact that social support has been found to be a protective factor to families of children with ASD, the available social support to families of children with ASD in Uganda during times of crises remains largely unknown, while the meanings that families generate from the experience of crises is undocumented.
Statement of the problem
Raising a child with ASD has been described as challenging, demanding, and mentally draining (Padden & James, 2017). Although most studies on ASD have been conducted across Europe, America, and other countries described as High and Middle income countries (HMIC), research into families of children with ASD in Uganda is rare (Arinda et al., 2021), and are limited to quantitative approaches focusing on only mothers (Pepperell et al., 2018). The little research studies in Uganda further shows that ASD support and treatment within the existing health systems is either lacking or inadequate (Arinda et al., 2021). In fact, the health workers working with families of children with ASD in Uganda report experiencing many crises (Kakooza-mwesige et al., 2014).
Regrettably, how these crises are manifested to the families, how they are described, the meanings family members attach to the crises, and the social support available during times of crises remains unknown and undocumented (Kakooza-mwesige et al., 2014) thus, any meaningful intervention to these families can only be achieved if crises are well explored and understood.
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