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The four chosen characteristics of the disabled sibling (possible caregivee) with autism or Down syndrome (severity of autism symptoms, problem behavior, adaptive behavior, and age/developmental life stage) are discussed below. Three of the four variables (severity of autism symptoms, problem behaviors, and adaptive behavior) were hypothesized to affect a caregiver’s psychosocial outcomes. (The three primary Adult with Autism/Down Syndrome (Caregivee) Characteristics hypotheses are listed in Table 3).

AH3.A) Severity of Autism Symptoms

The severity of one’s autistic symptoms may impact the sibling relationship and a typically developing sibling’s willingness to provide care. A study by Ingersoll and Hambrick (2011) found that child symptom severity was positively correlated with stress and depression in parents of children with ASD. Symptom severity has been associated with increased individual and family burden in a prior study (Stuart & McGrew, 2009). The current study hypothesized that an increase of autism symptoms would result in decreased health-related quality of life, fewer reported benefits, and increased caregiver burden in non-disabled adult siblings.

Problem Behavior (AH3.B) and Adaptive Behavior (AH3.C)

The amount of care that adults with autism or DS require depends to a large extent on their degree of adaptive behavior and functional independence, which may

consequently affect caregivers’ psychosocial outcomes. Adults with ASD have more unmet needs and behavior problems and are less likely to have residential independence than adults with Down syndrome are (Esbensen et al., 2010). Caregiving demands tend to increase with the number of problem behaviors (PBs) present and with greater limitations in functional independence (adaptive behavior). Problem behaviors such as self-injury or aggression tend to require more intensive monitoring and intervention, adding to overall caregiving demands. Similarly, depending on a disabled sibling’s functional limitations, a caregiver may perform a hands-on duty (direct care) or arrange care using an external resource (indirect care). Deficits associated with autistic disorder are in areas of work, self-help, leisure, and hygiene (Matson et al., 2012). Thus, a non- disabled adult sibling may need to directly assist with activities of daily living (ADLs) and bathe, dress, cook for, or shop for his/her sibling with autism or DS. Similarly, if a disabled sibling cannot manage his/her household chores, cannot balance a checkbook, or cannot use public transportation, these tasks also become the responsibility of the sibling caregiver. In addition, a non-disabled sibling may need to assist his/her adult sibling in finding appropriate support services (i.e., speech, occupational, physical, and

psychological therapy).

A study surveyed 280 spouses/partners and 243 adult/child caregivers of individuals with chronic illnesses to assess whether assisting with ADLs and PBs was related to levels of caregiver burden. Results found that assisting with ADLs was directly related with objective burden in both groups of caregivers. Moreover, assisting with PBs was related to all dimensions of burden: stress, relationship, and objective burden

sibling has more problem behaviors and fewer independent living skills (lower adaptive behavior) his/her non-disabled sibling would report a lower health-related quality of life, increased caregiver burden, and fewer benefits within the sibling relationship. Greater adaptive behavior was hypothesized to be related to better psychosocial outcomes.

Age/ Developmental Life Stage of the Sibling with Autism or Down Syndrome

Caregivers’ outcomes may be associated with the developmental life stage of their sibling with autism. Particularly difficult challenges are likely to be encountered at vulnerable transitions along the disabled sibling’s developmental pathway. The changes in available resources and/or the demands of adulthood may present new challenges for individuals with autism and DS and their caregivers. Services that were once provided free of charge for children with disabilities may now cost money, no longer be offered or be offered less often; finances may be stretched as caregivers are planning not only for their loved one’s future, but for their own as well. Transitional periods may include: 1.) birth and early childhood, 2.) time of diagnosis, 3.) transition to elementary school, 4.) adolescence and transition to high school, and 5.) adulthood, postsecondary education, independent living, and entering the world of work (Turnbull et al., 2006). It has been recommended that future research explore the stresses of these transitional points and support systems over time in families who have children with autism (Gray, 2006 and Hare et al., 2004, as cited by Meadan et al., 2010). For example, while some children benefit strongly from educational opportunities and develop skill sets that enable them to enter the workplace and/or attend post-secondary school, individuals with more severe

autism symptoms and behavior problems may have difficulty supporting themselves and often times become the responsibility of their family members during their adult years. Alternately, external residential placements and services including job coaches or day programs may be sought out when families have the financial resources or educational awareness to do so.

By using age as a proxy for developmental life stage, I explored whether health- related quality of life would decrease and caregiver burden would increase as a disabled sibling ages. Because caregivers’ and caregivees’ ages are highly correlated, only one exploratory hypothesis was proposed pertaining to age/developmental life stage (EH.3; see Table 5).