儿童和青少年癌症对家庭照顾者的影响：压力、资源和应对行为的定性分析。
Impact of childhood and adolescence cancer on family caregivers: a qualitative analysis of strains, resources and coping behaviours.
机构信息
School of Nursing and Midwifery, College of Health Sciences, Private Mail bag, Kwame Nkrumah University of Science and Technology, University Post Office, Kumasi, Ghana.
Onwe Government Hospital, Ejusu District, Ejisu, Ghana.
出版信息
BMC Psychol. 2023 Oct 28;11(1):361. doi: 10.1186/s40359-023-01406-w.
BACKGROUND
The physical demands of caring for children and adolescents diagnosed with cancer, over a lengthy period, exert significant strain on the health and well-being of family caregivers. The capacity of family caregivers to surmount and cope with the various strains they experience due to the diagnosis and treatment trajectory is essential to the quality of life of the child and adolescent who has been diagnosed with cancer. However, the experiences of family caregivers have been under-explored. This study explored the strains, resources, and coping strategies of family caregivers of children and adolescents diagnosed with cancer in Ghana.
METHODS
Guided by a descriptive phenomenological design, 20 semi-structured interviews with family caregivers were conducted at a tertiary health facility that provides paediatric oncology services. The study was conducted between June and October 2022. The interviews were transcribed verbatim, translated and coded using NVivo software. An inductive thematic analysis approach using Vaismoradi et al.'s thematic analysis framework was followed in analysing the data.
RESULTS
The study revealed that family caregivers of children diagnosed with cancer experienced three main strains: somatic strains (poor sleep quality, loss of appetite, and unintended weight loss), economic strains (financial burden and loss of economic livelihood), and psychosocial strains (isolation from social activities and network, frustration and helplessness, and balancing multiple family needs). The following themes emerged as coping resources: family cohesiveness, community support, and support from health care providers. Coping strategies that emerged included trusting in God and being self-motivated.
CONCLUSION
The study concludes that family caregivers experience somatic, economic, and psychosocial strains. However, they can leverage available resources (family cohesiveness, community support, and support from healthcare providers) to cope with these strains. There is a need to educate and sensitize family caregivers about the potential strains that they are likely to experience prior to the assumption of care roles. Also, the formal inclusion of non-governmental organizations and religious bodies will ensure that family caregivers receive sufficient community support to cope with the strains of caregiving.
背景
照顾被诊断患有癌症的儿童和青少年需要长期付出身体上的努力，这对家庭照顾者的健康和福祉造成了巨大的压力。家庭照顾者克服和应对因诊断和治疗轨迹而产生的各种压力的能力，对被诊断患有癌症的儿童和青少年的生活质量至关重要。然而，家庭照顾者的经历还没有得到充分的探索。本研究探讨了加纳儿童和青少年癌症患者家庭照顾者的压力、资源和应对策略。
方法
本研究采用描述性现象学设计，在一家提供儿科肿瘤服务的三级医疗机构对 20 名家庭照顾者进行了半结构式访谈。研究于 2022 年 6 月至 10 月进行。访谈逐字记录、翻译并使用 NVivo 软件进行编码。采用 Vaismoradi 等人的主题分析框架，采用归纳主题分析方法对数据进行分析。
结果
研究结果显示，被诊断患有癌症的儿童的家庭照顾者经历了三种主要的压力：身体压力（睡眠质量差、食欲不振和意外体重减轻）、经济压力（经济负担和经济生计损失）和心理社会压力（与社会活动和网络隔离、挫折和无助、平衡多个家庭需求）。出现的应对资源包括家庭凝聚力、社区支持和医疗保健提供者的支持。出现的应对策略包括信任上帝和自我激励。
结论
研究得出结论，家庭照顾者会经历身体、经济和心理社会压力。然而，他们可以利用现有的资源（家庭凝聚力、社区支持和医疗保健提供者的支持）来应对这些压力。在承担照顾角色之前，有必要对家庭照顾者进行潜在压力的教育和敏感性培训。此外，正式纳入非政府组织和宗教团体将确保家庭照顾者获得足够的社区支持，以应对照顾压力。
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