Caracterización mediante técnicas electroquímicas

The presence or absence of caregiving resources may also impact caregiver outcomes. Three supports have been identified that can act as resources in a caregiving situation: social support, respite care, and formal supports (Meadan et al., 2010). Social supports are non-paid supports to the non-disabled adult sibling, including emotional and informational support. Respite and formal supports are typically paid services that provide therapeutic and financial assistance, as well as assistance with behavior problems. The three types of caregiving supports are discussed below and the two primary Caregiving (Caregiver) Resources hypotheses can be found in Table 4.

Social Supports for Adult Sibling Caregivers (AH4.A)

Social and emotional supports have been shown to lower stress levels in parents of children with autism (Turnbull et al., 2006). “Social support includes support from one's spouse, family and friends, availability of leisure time to participate in recreational activities, and availability of services and community programs for family members” (Siklos & Kerns, 2006, as cited by Meadan et al., 2010, p. 26). Informal support, which includes help from family and friends, significantly decreased depressed mood among parents of children with ASD (Benson, 2009). Additionally, satisfaction with social support (perceived support) may be more important than the actual number of supports (Meadan et al., 2010). Moreover, both general social support and autism-specific support may help to buffer the stress effects of caring for a child with autism (Stuart & McGrew, 2009). It was hypothesized that sibling caregivers who perceive general social support would have more positive psychosocial outcomes in adulthood: greater health-related quality of life and reported benefits, and decreased caregiver burden.

Respite Care (AH4.B)

Respite care is a support service in which a hired individual provides care for a child or adult with ASD for a specified period of time, on a consistent basis (Meadan et al. 2010). Unlike most services for ASD, respite care is targeted at families, rather than the person with ASD. Cowen and Reed (2002) expanded the definition of respite care to include additional supports and services including referrals for other types of assistance (Meadan et al., 2010). Spouses may also provide an informal source of respite by

dividing the responsibilities of household management and sharing the role of

disciplinarian (Meadan et al., 2010). Respite care has been shown to benefit parents of individuals with developmental disabilities. For example, on a short-term basis, respite care can reduce stress levels in parents of children with disabilities (Meadan et al., 2010). Moreover, in a study of 113 children with autism and their families, respite care was rated as the most helpful service in reducing caregiver, family, and financial stress out of all the possible interventions families typically receive (Ruble & McGrew, 2007). In the current study, it was hypothesized that caregivers receiving respite care would have increased health-related quality of life, decreased caregiver burden, and increased reported benefits in their sibling relationship.

Formal and Financial Supports (AH4.B)

Caregivers with greater financial resources have been shown to have better access to services and support groups. Mandell and Salzer (2007) found that parents of children with ASD who lived in poorer communities or in communities with a higher proportion of African American families had little access to parent support groups; thus, they had less access to the information and services that support groups provide.

Bromley et al. (2004) noted that when parents live in areas with greater wealth, they often have lower levels of stress than those who live in rural or inner-city areas where assistance is not as easily available. It is probable that the factors impacting the types of supports a person with autism receives will extend into their adulthood. Specifically, financial burdens may be placed upon a non-disabled adult sibling when

parents are no longer able to provide financial support for their child with autism or when they have not set up measures to ensure the financial security of their disabled child. In this study it was predicted that non-disabled siblings (caregivers) with fewer financial supports would have greater caregiver burden, lower levels of health-related quality of life, and report fewer benefits in their sibling relationships.

Formal support services consist of support groups and professional services provided to both the individual with autism and his/her family members (Meadan et al., 2010). Supports include those provided to the individual with autism, directly reducing the demands on the caregiver, as well as supports provided to the caregiver, which may indirectly reduce or alleviate caregiver burden (e.g., support groups). For example, Sanders and Morgan (1997) suggested that supportive therapy allows parents to discuss issues and share their concerns (Meadan et al., 2010). By discussing matters including financial planning or the long-term care of their child with ASD, parents’ quality of life may increase. Sibling support groups including “Sib Shops” have been shown to be effective in educating and providing support to siblings during childhood (Smith & Perry, 2005, as cited by Meadan et al., 2010). However, formal supports may not be equally available to all. A study by Thomas et al. (2007) found that minority families, those families whose members had little education, those who did not use mainstream treatment approaches, and/or those who lived in rural areas had less access to formal support services (Meadan et al., 2010). Moreover, direct supports, such as in home habilitation services, residential supports, and behavioral management, provide paid professional services for the individual with ASD and, thus, directly reduce caregiver demands and caregiver burden (Ruble & McGrew, 2007).

In the current study, I investigated the relationships between the helpfulness and number of financial and formal supports a family received and the psychosocial outcomes of non-disabled siblings. It was predicted that increased respite care, financial, and/or formal supports would be associated with increased health-related quality of life, decreased caregiver burden, and increased reports of benefits.