Abstract:
افزایش نرخ تشخیص کودکان با اختلال اتیسم و تأثیر عمیق حضور آنان بر حیات خانواده به‌خصوص مادران در عهده‌داری مسئولیت دشوار والدگری، نگهداری، رسیدگی، مراقبت و همراهی آنان در مراجعات درمانی و توان‌بخشی، موضوع قابل توجهی نزد پژوهشگران مطالعات زنان و خانواده است. در این زمینه برخورداری از حمایت اجتماعی می‌تواند موجب تسهیل امور شده و از فشار نقش اجتماعی مادران بکاهد. با درک این امر و نظر به قلت پژوهش‌های انجام شده در این حیطه، تحقیق حاضر با رویکرد کیفی و به کمک مصاحبه نیمه‌ساختارمند با 18 نفر از مادران دارای کودک با اختلال طیف اتیسم در استان تهران سامان یافت تا پنداشت آنان از انواع حمایت اجتماعی دریافت شده را احصا نماید. نتایج بیان‌کننده آن است که حمایت عاطفی ابرازشده شوهران در طیفی از درک، توجه و همدلی از یک‌سو و انکار و مقاومت عده‌ای دیگر قرار دارد. به‌علاوه ابراز همدلی و امیدبخشی و یا سرزنش و مقایسه از سوی خانواده والد زوجین اشکال دیگری از حمایت عاطفی ادراک‌شده مادران است. عدم اطلاع‌رسانی کافی به جامعه مادران و نیز کودکان موجبات سرزنش، قضاوت نادرست و عدم درک از سوی سایرین را به‌همراه داشته و به‌عنوان عامل محدودیت‌زا بر وخامت گذران زندگی روزمره کودک و مادر می‌افزاید و منجر به طرد اجتماعی و انزوای خودخواسته آنان می‌گردد. حمایت ابزاری اظهارشده نیز اندک و ضرورت بازنگری و تدوین دستورالعمل‌های متناسب با وضعیت معیشتی خانواده این کودکان را محسوس می‌سازد. برخورداری از سطوح بالاتر حمایت اجتماعی مستلزم سیاستگذاری اجتماعی فرهنگی منطبق با نیازهای کودک و مادر است.
The diagnosis of autism in children and its profound impact on family life, especially for mothers who bear the difficult responsibility of parenting, caring, and accompanying them in rehabilitation treatment, is a significant issue for researchers in women and family studies. Having social support can facilitate matters and reduce the pressure of the social role of mothers. Realizing this and considering the scarcity of research in this field, the present study was organized with a qualitative approach and semi-structured interviews with 18 mothers of Autistic children in Tehran province to receive their perceptions of various types of social support. The results indicate that emotional support expressed by husbands varies from understanding, attention, and empathy on the one hand, to denial and resistance on the other. Moreover, expressing empathy and hope or blame and comparison by the couple's parents and family is another form of perceived emotional support for mothers. Insufficient information to the adult and children communities leads to blame, misjudgment, and misunderstanding by others that become limiting factors, deteriorating the daily life of children and mothers, and leading to social exclusion and voluntary isolation. The stated instrumental support also highlights the need to review and develop guidelines tailored to the living conditions of these children's families. Having higher levels of social support requires socio-cultural policies that meet the needs of the child and the mother. Keywords Instrumental Support, Information Support, Emotional Support, Spouse Introduction The family is the most important pillar of our society, which has maintained its undisputed position despite social changes and the birth and transformation of other institutions. The existence of the family depends on the optimal responsibility of its role bases and related functions. In the meantime, women, taking on the role of mothers, in addition to the survival of the generation, take care of and educate the children and foster the next generation. This issue requires different duties in families with an injured member, especially a young child, and as a result, puts additional pressure. Mothers are the first ones who are in contact with the child and show sensitivity to differences and experience a range of reactions from acceptance to denial and its consequences from companionship to isolation and feelings of self-inferiority. Since care is considered the most common characteristic of mothers in our society and forms the main form of gender order in the family, the care of children with developmental disorders, in addition to the biological context, which includes maintenance, food handling, clothing, treatment, health care and also clinical during illness, includes behavioral training. As full-time nurses, mothers are compassionately responsible for care, treatment, daily exercises and frequent visits to specialists. Autism is a group of developmental disorders of the nervous system and indicates a type of developmental disorder that is manifested through failure in verbal and communication behaviors and the presence of abnormal patterns. Communication and social skills of a person are disturbed (Samadi, 2012). The criteria for identifying autism disorders are limited to two areas of interests and repetitive activities, as well as communication and social interaction, which are grouped into three classes according to the severity of the disorder (Lee et al., 2017). Due to the diversity in the symptoms of autism spectrum disorder and the lack of sufficient methods to diagnose this disorder, it is difficult to determine the exact prevalence of this disorder. According to the US Centre for Disease Control and Prevention, one percent of the world's population has autism spectrum disorder. Based on this, it seems that the issue of mothering children with special needs should be studied to introduce their challenges and problems as well as opportunities. These methodical studies can be a valid basis for social welfare policies. By alleviating the sufferings of these women in enhancing the experience of motherhood and culturally promoting it, clear and timely executive actions can be taken. Methodology This research was conducted with a qualitative approach and with the help of semi-structured interviews. The flexibility that exists in this type of interview makes it possible to deal with new aspects of the subject that were hidden from the interviewer's view and were important from the interviewee's point of view. In total, 18 mothers with autistic children who attended the relevant medical centres in Tehran province and were willing to talk were interviewed in a targeted manner. Data were coded, categorized, and analyzed based on the conceptual framework. Findings Classification of types of social support The types of social support reported by mothers with autistic children can be classified into major emotional, and instrumental categories. Having the emotional support of a spouse, family, and also husband family are all emotional support. Regardless of the socio-economic origin, parenting of an autistic child has brought various challenges to the couple's relationship. As a result, the emotional support of the mothers of these children from their side has been understood and considered in a spectrum from companionship to passivity and resistance to the need to receive specialized training and care. One of the acquaintance groups that has been able to be effective in the emotional support of mothers is mothers in a similar situation. The base of matching role, intimacy, and identification has been effective in clarifying and establishing this matter. They help much more than the husband of the family. Self-esteem support This support means that others understand the activist in difficulties or psychological pressures that she is a valuable person and can overcome difficulties by using her special abilities. Information support The basis of this support is that a person can get the information he needs to solve his problems, according to the social support received from official and informal groups, while establishing communication and in the course of interaction. Mothers generally think that there is no correct, accurate and reliable information about this disorder in cyberspace and public space. This lack of information and the resulting lack of support from others has caused a lack of companionship, unnecessary intervention, parents' arrogance, and as a result, mothers' desperation to confront others with their children's behavior. Instrumental support This support means having access to financial resources and services in hardships and difficulties that the person deserves to receive. This form of support is related to receiving material, objective, and real assistance. During the research among this number of mothers, it was found that the economic status of the families of these children is not favourable, and they considered the current expenses of autistic children as an important issue. Result In addition to having or not having a husband’s support, regarding the quotes, we are faced with the complexity of the life of couples with autistic children. It seems that this is related to factors such as the employment status of the head of the household and sources of income, the number of children, and the couple's relationship. The lack of free time, postponed demands in the face of the dire reality of the life of an autistic child, frustration, depression, and anger, disruption in the marital relationship and the absence of social support have had their destructive effects on the couple's relationship. As we have seen, even couples who seem to have sufficient financial security have experienced inflammation in their relationship. The emotional support of the woman's parent's family is the second principle of support in their lives, which is provided to mothers in proportion to their geographical proximity. On the opposite point, the family of the father-in-law is mainly known as the others in mothers' lives, and they have minimal interaction with mothers by not providing enough emotional support, inappropriately comparing healthy children with autism, projecting disorders to educational matters, and blaming the mother for incompetence. Instrumental support perceived by mothers in the form of providing basic educational facilities, and government treatment is worthy but insufficient. With the concentration of these facilities in major cities due to the high cost of transportation and also the difficulties of taking responsibility on the part of mothers, a large number of needy children do not find the ability and opportunity to access it. Informational support expressed by mothers is at the lowest possible level. They also did not have reliable and clear channels of information available when facing their children's autism disorder, and the lack of early diagnosis or confusion in diagnosing the problem of some of them is also considered as one of the issues. The issue of teaching crisis resolution skills should be on the agenda for both parents and their parents' families. Developing supportive laws at the macro and medium levels, as well as approving socio-cultural policy protocols to carry out specialized interventions considering the conditions of mothers as constant companions of autistic children, are other strategies to reduce suffering and improve the quality of life of mothers.
Machine summary:
مقاله پژوهشی واکاوی حمایت اجتماعی و وابسته های آن در تجربه زیسته مادران دارای کودک اتیسم 1 1 سمیه سادات شفیعی 2 سارا شفیعی چکیده افزایش نرخ تشخیص کودکان با اختلال اتیسم و تأثیر عمیق حضور آنان بر حیات خانواده به خصوص مادران در عهده داری مسئولیت دشوار والدگری، نگهداری، رسیدگی، مراقبت و همراهی آنان در مراجعات درمانی و توان بخشی ، موضوع قابل توجهی نزد پژوهشگران مطالعات زنان و خانواده است .
درنهایت ، به مطالعه چیمه و همکاران (١٣٨٦) میتوان اشاره کرد که با بررسی مشکلات و نیازهای مادران کودکان مبتلا به اختلالات آتیستیک دریافتند این مادران با مشکلات نظیری برچسب خوردن کودک و خانواده ، مقصر دانستن مادر در شکل گیری اختلال ، مقایسه کودک مبتلا با کودکان عادی و تردید در تأثیر برنامه های آموزشی دست به گریبان هستند که منجر به کاهش روابط اجتماعی و مشکلات خانوادگی میشود.
اما، پژوهشگران در این مقاله با درک ابعاد و ویژگیهای تجربه زیسته مادران دارای فرزند اتیسم بر روابط اجتماعی در سطوح خرد، میانه و کلان ، به ویژه روابط فرد با سایر افراد، گروه ها و نهادها تمرکز داشته و حمایت اجتماعی از این مادران را در مواجهه با عوامل بروز تنش ، فشارزا و هزینه های جسمی و روانی متبادر آن در جهت تخفیف رنج ، تسهیل امور، کاهش بحران و بهبود وضعیت مراقبت دهنده / مراقبت شونده و بهبود کیفیت زندگی زنان و در نهایت خانواده مورد مطالعه قرار داده اند.
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