Otizme Yolculuk: Otizmli Çocuğa Sahip Ebeveynlerin Sosyal Destek Algılarına İlişkin Görüşleri

Having a child for families has been often seen as a positive experience; however, a new child‘s participation in the family has also been regarded as an important transition period for families that requires each family member to adjust to the new individual (Nealy, Hare, Powers & Swick, 2012). In addition to the changes in many areas of life such as diminishing time spend on social activities, changing sleep patterns, making adaptations in job duties and professional development, a new individual's joining the family necessitates rearrangement of parents' roles and establishment of new family routines (Kazak ve Martin, 1984; Tra., Kaner, 2004). In families‘ adaptation to these routines, some parents learn that their child is not a typically developing child, the joy felt upon the birth of the child can be replaced by a sense of shock and an intense grief (Cassidy, McConkey, Kennedy & Slevin, 2008). One of the most important factors which facilitates successful adaptation to the presence of a child with autism is the social support services (Barnes et al., 2011; Boyd, 2002; King, 2011) that address the various needs of the child with autism and their parents, reduce families‘ various problems, make it easier for families to cope with problems and reduce parents‘ stress level (Bloch & Weinstein, 2010; Dyson, 1997; Ludlow, Skelly & Rohleder, 2012). It is reported in the qualitative research studies conducted in recent years that living with a child with autism is a condition which may affect the mother, the father, siblings in the family, and other people close to the family (Brown, 2012; Cassidy, McConkey, Kennedy & Slevin, 2008; Ludlow, Skelly & Rohleder, 2012; Nealy, Hare, Powers & Swick, 2012). Parents who have a child with autism state that their daily lives and social lives have changed after their child‘s diagnosis (Brobst, Clopton & Hendrick, 2009; Woodgate, Ateah & Secco, 2008) and this chance is very difficult to accommodate (Ludlow, Skelly & Rohleder, 2012; Nealy, Hare, Powers & Swick, 2012). In order to provide social support services to parents, initially parents‘ perceptions of social support should be understood and the dynamics that affects social support perceptions of the families need to be identified. This understanding is only possible by examining the social support perceptions of parents who have children with autism. Therefore, the purpose of this study was to investigate the social support perceptions of parents, who have children with autism within the Turkish culture. Method Research Model This study has been conducted utilizing a qualitative research model. Semi structured interviews were conducted with the participating parents and parents‘ answers were generated under the themes that indicate social support perceptions of the parents Participants The participants were identified using the criterion sampling technique which is one kind of the purposive sampling techniques. The selection criteria for generating the participating parents were as follows: the participants c) were the primary caregivers of children with autism a) had children with autism between the ages of 2-12, b) their children received the diagnoses in child psychiatry clinics from state hospitals and/or university hospitals, and d) were willing to participate in the study. Having met the specified criteria, a total of 50 participants constituted the participants group of the study. From fifty participants, ten had children enrolled in special education centers located in Ankara, twenty had children enrolled in official autistic children education centers located in Isparta, and twenty had children enrolled in official autistic children education centers and special education centers located in Istanbul. Data Collection Semi-structured interviews were conducted in the study. An interview form which was comprised of semi-structured open-ended questions that were designed based on the literature review conducted by the researchers was prepared for the interviews. Following the identification of the research questions, three researchers conducted one-to-one interviews with fifty parents. All interviews were conducted on the day and the time deemed appropriate for the participants. Each interview lasted approximately 30 to 60 minutes. Data Analysis Following the completion of interviews with the parents, the interviews were transcribed without making any corrections; the expressions of parents were written verbatim as they were heard by the researchers. Descriptive analysis of the study data was carried out using the research themes identified by the researchers in consensus. Descriptive analyses were conducted by the researchers independently and the reliability was achieved by reaching a consensus on the analyses. Results When the parents with children with autism were asked about the differences between them and other families with typically developing children, findings showed that the most common response was the social life-style differences (N = 12, 24%) whereas the second most common response was the difference in parents perception of time passing. Parents with children with autism perceived themselves as spending more time for their children and feeling exhausted when they compared themselves to parents of typically developing children. The sustained decline in the number of people interacting in their daily life and social environment (N=10, 20%) and the decrease in the frequency of family visits (N=9, 18%) were found to be among the primary effects of having a child with autism on parents‘ daily life and social activities. It was also found that when a child' with autism joined the family, siblings were also affected in the family displaying emotional and psychosocial problems. In the view of the information gathered from the parents, in addition to negative emotions such as worrying (N=7, 14%), being not able to accept the situation (N=6, 12%), and feeling embarrassed (N=3, 6%) that were observed in typically developing siblings, neutral emotions such as being not affected by the situation (N=4, 8%) and positive emotions such as taking more responsibility (N=2, 4%) were also discerned. When the needs of families of children with autism were examined, the vast majority of families were found to have economic (N=42, 84%) problems. In addition, participating families explained that they have various needs especially psychological (N=37, 74%) and social needs as well (N=35, 70%). Families indicated that their lives would be easier with the facilities of child-care institutions (N=16, 32%), participation in family education (N=12, 24%), and access to experts providing psychological support (N=10, 20%). As a result of the interviews, it was found that the families have many concerns about the future of their children. The families indicated that their biggest concern is particularly about the absence of the people and / or institutions that will take the responsibility of taking care of their children when they die (N=40, 80%).When the parents' expressions were analyzed in regard to their concerns about the future of the families, it was found that the vast majority of families do not think about the quality of their personal life as important (N=35, 70%). Discussion It is often emphasized in the literature that the presence of people and institutions supporting parents socially and other social support services increase the life satisfaction of parents (Kaner, 2004) and provide them with physical and emotional relief (Ludlow, Skelly & Rohleder, 2012; Nealy, Hare, Powers & Swick, 2012) because it protects parents from stress (Starr & Foy, 2012). In addition, for the services provided to children with special needs to become effective, primarily the needs of parents, their changing roles due to living with a child with special needs, the changes in their social lives, the mechanisms for coping with the challenges, and the sources of support should be examined (Altiere & Kluge, 2009a; Kaner, 2004) In addition, the need for planning and implementation of interventions and educational services in this direction is emphasized (Ozdemir, 2007; Ozdemir, 2008) In regard to planning educational services for children with autism, it should be known that the development of individualized family service plans are mandated especially in the United States in accordance with the legislative changes and early intervention programs (Kathryn & Bernard, 1999; (Mannan et al., 2006) In this context, it was emphasized in the literature that instead of taking the child to an education center and focusing only on child‘s educational needs, the law and practices should consider the needs of the parents (Ozdemir, 2007; Ozdemir, 2008; Turnbull et al., 2005) However, child-centered approaches are the primary focus of the educational programs in Turkey (MEB, 1997) beyond the family-centered intervention approaches despite the fact that special education services also involve parents (Ozdemir, 2007). As is mentioned previously, the need to re-evaluate the educational programs for children with special needs arises at this point. Therefore, it is clear that there is a significant need for designing family centered support services and offering parents such services to increase parents‘ social support perceptions and problem management skills as well as to support parental competence. Limitations / Suggestions Education levels and socio-economic status of the participating parents, the duration of children's enrolment in the special education schools and their autism severity were not equalized in the study. In relation to such variables for example, Nealy et al. (2012) have indicated that the socio-economic levels of parents are associated with addressing the needs of a child with autism and describing parents' perceptions about their child‘s needs. Thus in addition to establishing study groups by considering other study variables related to parents and children, further studies can focus on conducting descriptive research which recognizes parents' perceptions of social support. In addition, other than studying parents‘ perceptions, siblings and grand-parents can be examined and their social support perceptions can also be investigated qualitatively in relation to being a caregiver of a child with autism or being a member of the family.