Biru Mulatu, Lundqvist Pia, Molla Mitikie, Jerene Degu, Hallström Inger
a Department of Health Sciences, Faculty of Medicine , Lund University , Sweden .
b School of Public Health, Addis Ababa University , Ethiopia , and.
Issues Compr Pediatr Nurs. 2015;38(4):282-99. doi: 10.3109/01460862.2015.1079278. Epub 2015 Sep 16.
Family caregivers play a critical role in caring for children living with HIV, however, there is little knowledge about their experiences. The aim of this study was to illuminate the family caregivers' lived experiences of caring for a child when he or she has been diagnosed with HIV and enrolled to antiretroviral treatment. Qualitative interviews with 21 family caregivers of 21 children diagnosed with HIV were analyzed using an inductive design with a hermeneutic phenomenological approach. The caregivers' experience were articulated in 5 subthemes under the main theme of "Surviving overwhelming challenges": "Committed care-giving," "Breaking the family life," "Caring burdens," "Confronting conflicts," and "Living with worry." Despite the difficult situation the family caregivers experienced with extensive worry, caring burdens, and disrupted family and social networks, they were committed caregivers. They were empowered by their belief in God but also by their strong belief in the child's treatment and support from healthcare workers. The healthcare system needs to consider possible ways to support the family caregivers during child's HIV diagnosis and treatment initiation as part of a continuum of care.
家庭照顾者在照顾感染艾滋病毒的儿童方面发挥着关键作用,然而,对于他们的经历却知之甚少。本研究的目的是阐明家庭照顾者在孩子被诊断出感染艾滋病毒并开始接受抗逆转录病毒治疗时照顾孩子的生活经历。采用诠释现象学方法的归纳设计,对21名感染艾滋病毒儿童的21名家庭照顾者进行了定性访谈并进行分析。照顾者的经历在“应对巨大挑战”这一主题下的5个子主题中得到阐述:“尽责照顾”、“打破家庭生活”、“照顾负担”、“面对冲突”和“忧心度日”。尽管家庭照顾者经历了艰难处境,面临着诸多担忧、照顾负担以及家庭和社会关系网络的破裂,但他们仍是尽责的照顾者。他们因对上帝的信仰而获得力量,也因对孩子治疗的坚定信念以及医护人员的支持而充满动力。医疗系统需要考虑在儿童艾滋病毒诊断和治疗开始期间支持家庭照顾者的可能方式,作为连续护理的一部分。