Session Information
07 SES 03 A, Immigrant Families, Parents and School Diversity Models
Paper Session
Contribution
Caregiving to children with disabilities can introduce substantial burden and stress to families, particularly to parents. The quality of the lives of caregivers can decrease due to high levels of stress and depression (Marron et al., 2013) as financial problems, physical stress, health problems, or social alienation can emerge in the family (Alaee et al., 2015; Nimbalkar et al, 2014). Loss of income, increasing expenses related to disability-specific treatment, or inability to find affordable and appropriate childcare are some of the challenges that families of children with disabilities may face. As Armstrong et al. (2005) suggest, the psychological, emotional, or social problems that occur in the family may have also an effect on the well-being of children with or without disabilities. The collective family stress can be experienced by all members of the family. Hence, the burden on caregivers should be addressed thoroughly to predict the risk factors, and stressors and to identify the intervention possibilities.
Although caregiving influence the whole family, the caregiver burden is to be experienced by the female members of the family, mainly mothers, in a more extreme way. Several studies showed that the negative impacts of caregiving are not equally distributed among male and female caregivers (del Rio-Lozana et al., 2013; Schulz & Sheerwood, 2008). Mothers or female siblings mainly are the ones who carry the emotional as well as a physical burden (Arab et al., 2020; Javalkar et al., 2017; Vadivelan et al., 2020) and they are the ones who mainly sacrifice their professional careers and social life. A female caregiver of a person with a disability can experience more disadvantages in multiple ways, which may impact her well-being and may increase her economic and social vulnerability (Qadir et al., 2011; Malhotra & Shah, 2015).
Added to the disadvantages based on gender, migration background can be another counterproductive factor that aggravates the caregiving burden for mothers. Families from a migrant background are mainly at greater risk of poverty, social and economic exclusion, and discrimination (De Trinidad, 2018; Joo, 2013; Uslucan, 2010), and having a disabled family member can amplify the stress factors for an immigrant family. In a comprehensive study in several European countries, Pierart et al. (2020) showed that migrant children with disabilities stay statistically invisible, and their and their families' needs are not responded to in a culturally sensitive way. When lack of suitable services gets combined with the precarious socio-economic situation and linguistic and cultural difficulties, immigrant mothers of children with disabilities can have additional and different challenges than non-immigrant mothers.
In this paper, a study with immigrant mothers of children with disabilities in Vienna, Austria will be presented. According to the latest evaluation of the National Action Plan: Disability, Austria fell behind in taking the migration factor into account while planning the support systems for families of disabled children (Biewer et al., 2020). Although the country has shown improvements in terms of providing resources to families with disabled children in recent years, the support system did not target easing the multi-layered family challenges at the nexus of disability and migration. The aim was to reach the emotional, social, economic, and health experiences of immigrant mothers who are caregivers of children with disabilities. An intersectional perspective was used to document the risk factors, stressors, and vulnerabilities of these families.
Method
In total 10 mothers were interviewed. The age of the participants ranged from 32 to 48. The criteria to be included in the study were having a child with a low incidence disability such as cerebral palsy, severe learning disability, or developmental and mental disability as well as having a migration background and emigrating to Austria at an adult age. These criteria were applied to reach mothers who mainly immigrated to Austria upon marriage or through family reunions as an adult. This assured reaching mothers with a migration background and limited German competencies who are more vulnerable to the complexity of the support systems. To obtain experiential and personal data from these mothers, intensive interviews were conducted. The interviews were conducted upon informed consent. The interviews were face-to-face with 6 mothers, while 4 mothers preferred online interviews. Reaching the data sources happened through an association that supports immigrant families of disabled children. Data collection started with convenient sampling, later snowball sampling took over the process where data-rich sources referred to other data-rich sources. All mothers were living in the city in densely populated neighborhoods and none had a job at the time of the study. The interviews were voice recorded and the 10 interviews produced in total 480 minutes of interview data, which was transcribed verbatim for the data analysis process. Transcription of the interviews resulted in 112 pages. The qualitative data were analyzed through content analysis (Fraenkel & Wallen, 2006) where the test-retest consistency method (Fraenkel & Wallen, 2006) and inter-coder agreement (Lombard, Snyder-Duch & Bracken, 2004) were applied for reliability concerns. Qualitative data was converted to codes, code trees, and categories. In this study, categories and codes were not determined beforehand, but they emerged during the data analysis. Some explanatory quotes from the participants were also used to validate the thematic analysis of the codes.
Expected Outcomes
The preliminary findings of the study showed that the family is understood as an institution and the cultural background of the family is an important department of this institution, which has an effect on the perceptions of disability, family burden, or stress factors. Several experiences of mothers are connected to the efforts to ease the collective family stress and to take over the responsibility by keeping other members of the family away from the stress factors. The challenges that mothers face, on the other hand, can be categorized into four themes including social exclusion and alienation, economic hardships, intrapersonal issues, and gender-based problems. The study also revealed that immigrant families experience an increased dependence on third parties to reach support systems and information, which is mainly provided in German and bound to complex bureaucracy.
References
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