ANALISIS Y DISCUSIÓN

Capability as defined by Patterson and Garwick in the Family Adjustment and Adaptation Response (FAAR) Model is the “potentiality the family has for meeting demands” (Patterson, 1988, p.216). According to the model, capabilities are divided into both coping behaviours and resources, two components that influence the individual’s ability to reach adaptation and both central themes in the current thesis. In operationally defining these themes, coping behaviours are “efforts by which an individual or group attempts to reduce or manage a demand” (p. 218) such as exercise and maintaining an optimistic outlook. As for the second factor, resources, they are separated into both informal resources (e.g., family and friends) as well as formal resources (e.g. therapy and support groups); medical facilities are also known as community resources.

There is little research looking at the experience of siblings of individuals with FASD, but other disability groups have been studied. Although some factors that influence adaptation are similar across disabilities (e.g., age, gender, severity of disability; Choi & Van Riper; 2013; Pilowsky, Yirmiya, Doppelt, Gross-Tsur, & Shalev, 2004), previous researchers have identified differences in the sibling experience based on the specific diagnosis of the sibling. Some of the

factors that vary depending on the DD include the types of relationships, physical health, mental health (Hodapp & Urbano, 2007), sibling rivalry (Kaminsky & Dewey, 2001), and the amount of time interacting with one another (Knott, Lewis, & Williams, 1995). That said, despite the similarities across factors that may increase or decrease a sibling’s ability to adapt, the stressors they face differ based on the disability of their brother or sister.

3.2.1 Coping Behaviours. Coping behaviours are one of the two capability components that play a role in the family’s ability to adapt; according to Folkman and Lazarus (1984), problem-focused coping (i.e., active coping, planning, suppression of competing activities, as well as positive reinterpretation and growth) directly addresses the problem. This method has been found to be generally adaptive (Folkman & Lazarus, 1984) and has been associated with closer sibling relationships (Orsmond & Seltzer, 2007b). However, emotion-focused coping (i.e., denial, focusing on and venting of emotions, behavioural disengagement and mental disengagement) is when an individual either avoids or emotionalizes the experience, which is generally maladaptive (Folkman & Lazarus, 1984).

Gamble and McHale (1989), on the other hand, coined the term “other directed cognitions”, a coping behaviour (e.g., blaming someone else) that was found to be associated with poorer scores on adjustment measures such as well-being, as well as attitudes and behaviours of one towards the sibling with a disability. One can argue however that directing their cognitions outwardly also avoids or emotionalizes the experience as presented by Folkman and Lazarus (1980). Interestingly, siblings of individuals with a disability and females of non- disabled siblings (Gamble & McHale, 1989), as well as siblings of individuals with ASD (Roeyers & Mycke, 1995), have been most likely to use “other directed cognitions.” However, more recent literature contradicts these findings. Instead Ross and Cuskelly (2006) found that

siblings of individuals with ASD use emotional regulation and wishful thinking. These findings may suggest that siblings of individuals with ASD are actively controlling their emotions to reduce the anger caused by aggressive incidences, and that they also have a strong desire for their situation to be different (Ross & Cuskelly, 2006). Additionally, Angell, Meadan, and Stoner (2012), highlighted that siblings of individuals with ASD reported restricting their boundaries (i.e., isolation), along with broadening their personal boundaries (e.g., obtaining support, educating others) as coping behaviours.

These results first identify that there is a distinction between which coping mechanisms are adaptive and which are maladaptive, and second, coping behaviours used by siblings may vary based on their brother or sister’s disability. Such claims place an emphasis on the need to identify what coping behaviours are being used by siblings of individuals with specific

disabilities such as FASD.

3.2.2 Resources. Many researchers have acknowledged that siblings of individuals with a disability are not only impacted by their experience but that they are also in need of support (McCullough & Simon, 2011; McGinty, Worthington, Dennison, 2008). In fact, resources that are available to a family and to siblings are strong predictors of adjustment and adaptation (Choi & Van Riper, 2013). For example, Van Riper (2000) examined family resources, demands, problem-solving, communication, coping, and sibling well-being in families of individuals with Down Syndrome (DS), and found that family resources were significantly correlated with sibling social competence and self-concept. Additionally, Kinsella et al. (1996) reported that siblings of individuals with a mental illness (e.g., Schizophrenia, Bipolar, Major Depression) who used resources outside of the family were “perceived to decrease the use of isolation as a means of

coping, promote normalization through the sharing of experiences, reduce stigma, and provide an excellent source of information” (p.30).

When examining sibling support groups, the literature is scarce. However, studies have identified that support groups do improve participants’ knowledge of their siblings’ disorder, their sense of connectedness with other children in similar family circumstances, and their perceptions of self-competence (Lobato & Kao, 2005). In addition, siblings reportedly

experience fewer emotional and behavioural difficulties compared to waitlist controls (Roberts et. al., 2015), experience increased positive effect on their feelings towards their sibling, and learn new coping strategies (Johnson & Sandall, 2005).

Unfortunately, not all of the resource literature is positive. Giallo and Gavidia-Payne (2006) studied the adjustment of siblings of individuals with a disability and found both parent stress and previous attendance at a sibling support group were significant predictors of

adjustment difficulties. Several other studies have shown that accessing professional support can have a negative impact not only on the families of children with a disability, such as financial pressure, sleep disturbances, and family job changes for parents (Rogers & Hogan, 2003), but it can also have a negative effect on the sibling relationship (Rivers & Stoneman, 2003).

Explanations for the negative impact of attending support groups have been speculated to increase family stress (Rivers & Stoneman, 2003), and if siblings are sensitive to the negative experiences of others they may increase their negativity towards their own experience (Giallo & Gavidia-Payne, 2006).

It is clear that the literature has yielded inconsistent findings in regards to the effect of resources and sibling groups on the well-being of siblings of individuals with a DD. Despite these varying results, it is evident that the type of disorder plays a role in the siblings’ use of

resources and coping behaviours. That said, it is important to study each disability separately to identify stressors as well as factors that influence adaptation that are specific to each disability. With FASD prevalence rates ranging from 9.1- 520 children per 1000 live births depending on the population being examined in North America (FASD Research Network, 2015; Ospina & Dennett, 2013), it is likely that there are many siblings of individuals with FASD. With little knowledge about these siblings, the recognition of such factors will, in turn, allow those in the clinical field to tailor supports specifically for these siblings.