Otizm spektrum bozukluğunda çocuk yetiştiren babaların tecrübeleri: Nitel araştırma

The purpose of this study was to describe the experiences of fathers who have an only-child with Autism Spectrum Disorder (ASD) using Ambiguous Loss framework. Sample was consisted of 10 fathers, one father being the pilot of the study. Main foci of the research were whether ambiguous loss is a contributing factor in relation with stress levels of fathers raising a child with ASD. Moreover, whether their personal experiences of ambiguous loss impacted family systems through boundary ambiguity was also explored. Semi-structured interviews were conducted with each father. The qualitative method of thematic analysis gave rise to 2 super-ordinate themes, 9 themes and 10 subthemes. First super-ordinate theme "Process of Acceptance" included 5 themes and 8 sub-themes: 1) "konduramama": straining self to accept ASD; 2) incomprehensibility of ASD; 3) emotional processes, 3a) feelings of guilt, 3b) pendulum of hope, 3c) concern for future; 4) receiving proper education, 5) making peace with ASD, 5a) increasing knowledge of disorder, 5b) reframing the situation, 5c) solution-orientedness, 5d) maintaining stability, 5e) attributions to something greater. This theme explained the stress increasing factors that fed fathers' inner conflict regarding the acceptance or rejection of the ASD and the ambiguity it brings. Moreover, those factors helping fathers to deal with the stress was explained. It is seen that most fathers were resilient enough to learn to live with the stress that their ambiguous loss brought. The second super-ordinate theme was "Impact on Family Life" and it included 5 themes and 2 sub-themes as follow: 6) shaping the world around ASD; 7) impact on couple relationship, 7a) emotional turmoil, 7b) positive emotional shift; 8) father as an outside support system; 9) estrangement of relationships. The fathers' experiences confirmed that ambiguous loss has increased their stress on their acceptance process of the disorder as well as on their family lives. Moreover, the boundary ambiguity was seen to be the main stressor on the impact on family life. It created an ambiguity on the roles and identities of the family member by changing the structure of the family in various ways. Ambiguous loss provides a unique understanding to the losses that are hard to capture. The results can inform interventions in couple and family therapies such as normalizing and externalization of the stressful father and families' experiences. Future studies can focus more on social relationship component of ASD from a paternal and familial context. Limitations and further information is discussed. Keywords: ambiguous loss, Autism Spectrum Disorder, father, family, systems theory, relationships