كليدواژه :
مراقب خانگي , ناتواني‌‌هاي حسي - حركتي , خستگي ناشي از شفقت‌ورزي , رضايت ناشي از شفقت‌ورزي
چكيده فارسي :
مراقبان خانگي در تمام دنيا در كنار متخصصان نظام سلامت از بيماران مراقبت مي‌كنند؛ اما براي اين مراقبت حقوقي دريافت نمي‌كنند و در بيشتر موارد نيازهاي آنها ناديده گرفته مي‌‌شود. هدف پژوهش حاضر، مطالعۀ تجربۀ مادران داراي فرزند توانخواه از خستگي يا رضايت ناشي از شفقت‌ورزي است. روش انجام اين پژوهش كيفي و از نوع تحليل مضمون براون و كلارك است. براي اين منظور دو مجموعه از دادهها تجزيه و تحليل شدند. مجموعۀ اول دادهها براساس مصاحبۀ عميق با 12 مادر بود كه دست‌كم يك فرزند توانخواه داشتند و به روش نمونه‌گيري گلوله‌برفي انتخاب شدند و مجموعۀ دوم از دادهها بر اساس خاطرات 8 مادر توانخواه بود كه در كانال رسمي يكي از انجمن‌‌هاي خيريه منتشر شده بود. يافته‌‌هاي به‌دست‌آمده در اين پژوهش در سه مضمون اصلي گذار از هويت مادرانه به هويت مراقب، حمايت ادراك‌شده و بركت نگهداري از فرزند دسته‌بندي شد. براساس يافته‌‌هاي به‌دست‌آمده مصاحبه‌شوندگان ابتدا گذاري ناگهاني از هويت مادرانه به مراقبتي داشته‌اند و همزمان با اين گذار حمايت اجتماعي كمي را ادراك مي‌كنند. مادران فعالانه به‌دنبال درمان‌اند و با در پيش گرفتن راهبردهاي معنوي يا فردي با اين گذار سازگار مي‌‌شوند و رضايت ناشي از شفقت را تجربه مي‌كنند. نتايج پژوهش مي‌توانند در تهيۀ پروتكل‌‌هاي مداخله‌‌اي براي تسهيل فرايند سازگاري با تغييرات عميق در روال زندگي مادران مراقب و توانمندسازي آنها براي گذاري موفق كمك كنند
چكيده لاتين :
Family 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 Methods
Braun and Clarke’s thematic analysis approach was employed to analyze two sets of data. The first set of data were collected through in-depth 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 & Conclusion
The 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.
