Ladak Laila A, Gallagher Robyn, Hasan Babar S, Awais Khadija, Abdullah Ahmed, Gullick Janice
Department of Paediatrics and Child Health, School of Nursing and Midwifery, The Aga Khan University, Karachi, Pakistan.
Susan Wakil School of Nursing and Midwifery, Sydney Nursing School, The University of Sydney, Sydney, Faculty of Medicine and Health, Sydney, New South Wales, Australia.
Cardiol Young. 2020 Aug;30(8):1126-1137. doi: 10.1017/S1047951120001663. Epub 2020 Jun 23.
This mixed-methods study aimed to assess health-related quality of life in young adults with CHD following surgery in a low middle-income country, Pakistan. Despite the knowledge that geographic, cultural and socio-economic factors may shape the way health and illness is experienced and managed and consequently determine a person's health-related quality of life, few health-related quality of life studies are conducted in low middle-income countries. This deficit is pronounced in CHD, so there is little guidance for patient care.
The study utilised concurrent, mixed methods. Adults with CHD (n = 59) completed health-related quality of life surveys (PedsQLTM 4.0 Generic Core Scale, PedsQLTM Cognitive Functioning Scale and PedsQLTM 3.0 Cardiac Module). Semi-structured interview data were collected from a nested sub-sample of 17 participants and analysed using qualitative content analysis, guided by the revised Wilson-Cleary model of health-related quality of life.
The lowest health-related quality of life domain was emotional with the mean score (71.61 ± 20.6), followed by physical (78.81 ± 21.18) and heart problem (79.41 ± 18.05). There was no statistical difference in general or cardiac-specific health-related quality of life between mild, moderate or complex CHD. Qualitative findings suggested low health-related quality of life arose from a reduced capacity to contribute to family life including family income and gender. A sense of reduced marriageability and fear of dependency were important socio-cultural considerations.
CHD surgical patients in this low-income country experience poor health-related quality of life, and contributing factors differ to those reported for high-income countries. Socio-cultural understandings should underpin assessment, management and care-partnering with young adults with CHD following surgical correction.
这项混合方法研究旨在评估在低收入中等收入国家巴基斯坦，接受手术后的冠心病青年成人的健康相关生活质量。尽管人们知道地理、文化和社会经济因素可能会影响健康和疾病的体验与管理方式，进而决定一个人的健康相关生活质量，但在低收入中等收入国家进行的健康相关生活质量研究却很少。这种不足在冠心病研究中尤为明显，因此在患者护理方面几乎没有指导。
该研究采用了同步混合方法。冠心病成人患者（n = 59）完成了健康相关生活质量调查（儿童生活质量量表4.0通用核心量表、儿童生活质量量表认知功能量表和儿童生活质量量表3.0心脏模块）。从17名参与者的嵌套子样本中收集了半结构化访谈数据，并使用定性内容分析进行分析，分析以修订后的与健康相关生活质量的威尔逊 - 克利里模型为指导。
健康相关生活质量得分最低的领域是情绪领域，平均得分（71.61 ± 20.6），其次是身体领域（78.81 ± 21.18）和心脏问题领域（79.41 ± 18.05）。轻度、中度或复杂冠心病患者在总体或心脏特异性健康相关生活质量方面没有统计学差异。定性研究结果表明，健康相关生活质量较低是由于对家庭生活贡献能力下降，包括家庭收入和性别方面。结婚能力下降的感觉和对依赖的恐惧是重要的社会文化因素。
这个低收入国家的冠心病手术患者健康相关生活质量较差，其影响因素与高收入国家报告的不同。社会文化理解应成为对接受手术矫正后的冠心病青年成人进行评估、管理和护理合作的基础。
