خستگی و رضایت ناشی از شفقت‌ورزی: تجربۀ مادران مراقب فرزند توانخواه

مراقبان خانگی در تمام دنیا در کنار متخصصان نظام سلامت از بیماران مراقبت می‌کنند؛ اما برای این مراقبت حقوقی دریافت نمی‌کنند و در بیشتر موارد نیازهای آنها نادیده گرفته می‌‌شود. هدف پژوهش حاضر، مطالعۀ تجربۀ مادران دارای فرزند توانخواه از خستگی یا رضایت ناشی از شفقت‌ورزی است. روش انجام این پژوهش کیفی و از نوع تحلیل مضمون براون و کلارک است. برای این منظور دو مجموعه از داده‌ها تجزیه و تحلیل شدند. مجموعۀ اول داده‌ها براساس مصاحبۀ عمیق با 12 مادر بود که دست‌کم یک فرزند توانخواه داشتند و به روش نمونه‌گیری گلوله‌برفی انتخاب شدند و مجموعۀ دوم از داده‌‌ها براساس خاطرات 8 مادر توانخواه بود که در کانال رسمی یکی از انجمن‌‌های خیریه‌‌ منتشر شده بود. یافته‌‌های به‎‌دست‌آمده در این پژوهش در سه مضمون اصلی گذار از هویت مادرانه به هویت مراقب، حمایت ادراک‌شده و برکت نگهداری از فرزند دسته‌بندی شد. براساس یافته‌‌های به‌دست‌آمده مصاحبه‌شوندگان ابتدا گذاری ناگهانی از هویت مادرانه به مراقبتی داشته‌اند و همزمان با این گذار حمایت اجتماعی کمی را ادراک می‌کنند. مادران فعالانه به‌دنبال درمان‌اند و با در پیش‌ گرفتن راهبردهای معنوی یا فردی با این گذار سازگار می‌‌شوند و رضایت ناشی از شفقت را تجربه می‌کنند. نتایج پژوهش می‌توانند در تهیۀ پروتکل‌‌های مداخله‌‌ای برای تسهیل فرایند سازگاری با تغییرات عمیق در روال زندگی مادران مراقب و توانمندسازی آنها برای گذاری موفق کمک کنند.

Fatigue and Satisfaction due to Compassion: the Experiences of Mother Caregivers of a Child with Disability

IntroductionFamily caregivers around the world care for the patients alongside the professionals with a difference that they do not get paid. Since the role of caregiving often happens suddenly and without prediction, the family might not have a predetermined plan and the available resources cannot be matched to their needs. This creates a pressure for caregivers and currently has affected many people around the world. According to the Global burden of disease study, it is estimated that around 15 percent of the world population suffer from some type of disabilities. It is also estimated that around 93 million children are living with severe or moderate disability (cited in WHO, 2011). In the majority of the cases, mothers are the primary caregivers. The aim of this research was to study the experiences of mothers of children with disability and the main question was whether and how mothers experience compassion fatigue and/or compassion satisfaction.  Materials and MethodsBraun and Clarke’s thematic analysis approach was employed to analyze two sets of data. The first set of data were collected through indepth interviews with 12 mothers with at least one child with a disability and the second set of data came from memories of 8 mothers with a child with disability that was published online in a NGO supporting families of children with special needs. The interviewees were mothers between 35 and 67 years old, the majority had one child with a severe disability, one participant cared for two and one participant cared for three children with severe disability. The children were between 10 and 48 and mothers were the primary caregivers the whole time. Participants were selected through snowball sampling. The other set of data were interviews published online with mothers who were caregivers of a child with disability. The interviews were analyzed until reaching to the saturation point. Data were analyzed using Braun and Clarke (2006) six stages of thematic analysis. Three main themes including pathway from motherhood identity to caregiver identity, perceived social support, and the blessing of caregiving were drawn from the data.   Discussion of Results & ConclusionThe results were categorized into three themes: pathway from motherhood identity to caregiver identity, perceived social support, and the blessing of caregiving.According to the findings, mothers will experience a sudden transition from mothering to caregiver role and will face grief over losing their wishes for their children future. The majority of participants talked about their shock and disbelief after hearing the bad news. They felt they were suddenly thrown out of their calm life to a situation without readiness. Mothers suddenly faced with news that, apart from their motherhood role, had to take a new role of caregiving.Women mentioned that they had little perceived social support from families, friends, relatives or even their husband. It is observed that emotional problems and compassion fatigue that women were experiencing were mostly drawn from social stigma and social isolation rather than the caregiving itself. Somatization and pain were the common effects of caregiving that women complained about but all women believed that caregiving were a blessing for them. In fact, after accepting the new situation, women actively looked for coping strategies and available services.  However, they were not passive and they were actively looking for a way to cope with the transition from motherhood to caregiver and experience compassion satisfaction. Taking a break, traveling, making herself busy, advocacy, and spirituality were some of the coping strategies women mentioned. Employing coping strategies and looking at the caregiving role as a blessing, leads to compassion satisfaction for participants. The result of this study can be helpful in creating interventions to facilitate adjusting with deep changes in the mother caregivers and empowering women toward a successful transition.