Butola Savita, Butola Damini
Border Security Force, Sector Hospital, BSF Campus, North Tripura, Tripura, India.
Department of Clinical Psychology, Ranchi Institute of Neuro-Psychiatry and Allied Sciences, Ranchi, Jharkhand, India.
Indian J Palliat Care. 2024 Jul-Sep;30(3):222-231. doi: 10.25259/IJPC_79_2023. Epub 2024 Aug 3.
Women form the backbone of caregiving in palliative home care throughout the world. They put in more intense care for longer hours, perform more intimate tasks, and face more physical and mental strain, comorbidities, anxiety, and depression. However, gender norms that perceive caregiving as a natural part of femininity dismiss this as part of their duty toward their family, thus making their care work invisible, taken for granted, and devalued. This results in women bearing more burden with less support and no appreciation and suffering more negative mental and physical health outcomes than men. Globally, women perform 76.2% of unpaid care work. India ranks a dismal - 135 out of 146 countries in the 2022 Gender Gap report. Less than 10% of Indian men participate in household work. Women in rural India continue to be less educated; the majority are not allowed to travel alone and are culturally not involved in decision-making, which is done by the males. Wives of armed forces personnel are forced to live without their husbands for long periods. This leads to even more challenges when they also need to take care of patients with life-limiting illnesses. No study has been done on this population till now. This study aimed to explore the experiences of the women in armed forces families, caring at home for patients with palliative needs.
This was a qualitative study based on a thematic analysis of semi-structured interviews with adult caregivers - either serving personnel or their dependent family members.
Female relatives were the main caregivers in 13 cases; the majority belonged to rural areas, were between 22 and 47 years of age, most were married, had young children, and reported health issues of their own. Major themes that emerged include lack of information, the expectation of being a caregiver irrespective of ability/needs, physical and psychological burden, neglected emotional needs, difficulty in traveling alone, social isolation, loss of employment with the financial burden, stigmatisation and ill-treatment of widows by in-laws.
'Soldier's wives, who must stay alone, face increased burdens as they face not only the physical and emotional burden of caregiving but also the additional challenges of living alone, mostly in rural Indian society, where gender norms are still deeply ingrained. Creating awareness about this vulnerable community among palliative care providers is required to improve services for them. There is also an urgent need for identifying, challenging, and addressing stereotyped roles and disparities in healthcare systems, practices, care goals, and policies by sensitising staff, educating families, developing gender-sensitive resources and support systems, initiating care discussions, and undertaking more gender-related research.
在全球范围内，女性是姑息性家庭护理中照护工作的中坚力量。她们投入更密集的护理，时间更长，承担更多私密任务，面临更多身心压力、合并症、焦虑和抑郁。然而，将照护视为女性特质自然组成部分的性别规范，将这一切视为她们对家庭应尽的义务，从而使她们的照护工作变得无形、被视为理所当然且价值被低估。这导致女性承担更多负担，却得到更少支持、没有赞赏，且比男性遭受更多负面的身心健康后果。在全球范围内，女性承担了76.2%的无薪照护工作。在《2022年性别差距报告》中，印度在146个国家中排名垫底——第135位。印度男性参与家务劳动的比例不到10%。印度农村女性的受教育程度仍然较低；大多数女性不被允许独自出行，在文化上也不参与决策，决策由男性做出。武装部队人员的妻子被迫长期与丈夫分离生活。当她们还需要照顾患有绝症的病人时，这会带来更多挑战。到目前为止，尚未对这一群体进行过研究。本研究旨在探索武装部队家庭中在家照顾有姑息治疗需求患者的女性的经历。
这是一项基于对成年照护者（现役人员或其家属）进行半结构化访谈的主题分析的定性研究。
13个案例中女性亲属是主要照护者；大多数来自农村地区，年龄在22至47岁之间，大多数已婚，有年幼子女，且报告自身存在健康问题。出现的主要主题包括信息缺乏、无论能力/需求如何都被期望成为照护者、身心负担、被忽视的情感需求、独自出行困难、社会孤立、失去工作并伴有经济负担、寡妇受到姻亲的污名化和虐待。
“必须独自生活的军嫂面临着越来越大的负担，因为她们不仅要面对照护的身心负担，还要面对独自生活带来的额外挑战，这在印度农村社会尤为突出，那里的性别规范仍然根深蒂固。需要提高姑息治疗提供者对这个弱势群体的认识，以改善为她们提供的服务。还迫切需要通过提高工作人员的敏感度、教育家庭、开发对性别问题敏感的资源和支持系统、发起护理讨论以及开展更多与性别相关的研究，来识别、挑战和解决医疗保健系统、实践、护理目标和政策中的刻板角色和差异。
