RESUMO
Objectives: 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. Materials and Methods: 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. Results: 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. Conclusion: '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.
RESUMO
Objectives: Access to palliative care is limited, especially in rural India. Children needing care by palliative teams may themselves be patients, or siblings and children of patients. Armed forces families face characteristic lifestyle challenges - frequent transfers, living in difficult and remote areas, serving personnel staying apart from families for long periods - very different from issues faced by civilians. Military service increases the risk of psychosocial burden for serving personnel as well as families. Most depend on private and state medical services for palliative care so it is important for the palliative community to understand their issues. This study aimed to explore the issues related to children - faced by armed forces families when caring for patients in palliative care. Material and Methods: Qualitative study based on thematic analysis of semi-structured interviews with caregivers - either serving personnel or their dependents, in three centres. Results: Analysis of the 15 interviews showed that armed forces families face complex challenges related to children when caring for the palliative patient due to frequent movement, lack of paediatric palliative services in far-flung areas, disruption of the continuity of care, social isolation, language, and cultural barriers when living in non-native areas, inability to build and access family and community support and financial burden due to restrictive reimbursement policies. Conclusion: Although medical and administrative support within the organisation provides a cushion, wives have to manage alone in the father's prolonged absence, and safety is a concern for children when living outside the campuses and serving personnel report guilt, anger, and helplessness at not being present when needed. Awareness of these issues can enable palliative workers to provide more meaningful support tailored to the needs of service families.
RESUMO
BACKGROUND: Mechanical ventilation (MV) in intensive care units (ICUs) is a stressful experience for patients. However, these experiences have not been systematically explored in low- and lower-middle-income countries (LLMICs). This systematic review (SR) aims to explore the patients' experiences of MV in ICUs in LLMICs and the factors influencing their experiences. METHODS: The PICO framework will be used to operationalize the review question into key concepts: population (mechanically ventilated adult patients in ICUs), phenomenon of interest (experiences) and context (LLMICs). PubMed, Embase, PsycINFO, CINAHL, Cochrane Library, Scopus and Web of Science will be systematically searched since database inception. Citation, reference list and PubMed-related article searching of included studies will be done to ensure literature saturation. Empirical peer-reviewed literature exploring adult patients' (aged ≥ 18 years) experiences of MV in ICUs in LLMIC will be included. All study designs (quantitative, qualitative and mixed methods) will be included. Two independent reviewers will perform screening, data extraction and critical appraisal. The mixed-methods appraisal tool (MMAT) and Popay's narrative synthesis will be used for critical appraisal and data synthesis, respectively. DISCUSSION: This SR aims to bridge a gap in knowledge as previous evidence synthesis has described this phenomenon in developed countries. The review design, with the inclusion of quantitative, qualitative and mixed-methods studies, intends to provide a rich and in-depth exploration of the issue. The findings will be presented as themes, subthemes and their explanatory narratives. The gaps in available literature will be identified, and implications of SR findings on policy, practice and future research will be presented. The strength of this SR lies in its systematic, comprehensive, transparent, robust and explicit methodology of identifying, collating, assessing and synthesizing available evidence. By prior registration and reporting of this SR protocol, we aim to ensure transparency and accountability and minimize bias. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42024507187.