Mkoka Dickson Ally, Nkingi Rehema
Department of Clinical Nursing, School of Nursing, Muhimbili University of Health and Allied Sciences (MUHAS), Dar-es-Salaam, Tanzania.
Critical Care Nurse Specialist, Muhimbili National Hospital, Dar-es-Salaam, Tanzania.
East Afr Health Res J. 2022;6(2):189-195. doi: 10.24248/eahrj.v6i2.699. Epub 2022 Nov 30.
Sickle Cell Disease (SCD) is most common genetic disorder and its prevalence in sub-Saharan Africa is increasing. Despite increased survival rates, experiences of adults living with SCD in Tanzania is not well explored. This article provides perceived causes of pain crisis, pain self-management approaches and psychosocial implication of SCD.
This study aimed at exploring experiences of adults living with SCD regarding pain triggering or aggravating factors; self-management for pain; psychosocial-economical implication of SCD and coping mechanism used by individuals living with SCD.
A qualitative study design was chosen using in-depth interviews with adults living with SCD to explore their experience of living with SCD. Fifteen adults aged 18 years and above living with SCD were interviewed. Data were analyzed by using content analysis approach.
Four categories emerged that described experiences of individuals with SCD. The four categories are; "Pain Triggering and Aggravating Factors" describing participants' perceived factors causing pain in SCD; "Self-care remedies for the pain" referring to participants' methods for self-management of pain; "Psychosocial-economic impact of illness" referring to participants' experience of implication of illness on social and economic life and "Dealing and coping with illness" referring to experience of participants on management and coping strategies used to live with the illness.
Individuals with SCD experiences several episodes of pain that affect their quality of life. Pain episode can be triggered or aggravated by various factors. Several approaches are used by individuals with SCD to self-manage the pain including taking rest, drinking plenty of water or using pain relieving medication. Care for individuals with SCD should be comprehensive and include proper management of pain, health education on home-based intervention for sickle cell pain, supportive services to deal with psychosocial implications of SCD and improving coping strategies to live with the illness.
镰状细胞病（SCD）是最常见的遗传性疾病，在撒哈拉以南非洲的患病率正在上升。尽管生存率有所提高，但坦桑尼亚成年SCD患者的经历尚未得到充分研究。本文介绍了疼痛危机的感知原因、疼痛自我管理方法以及SCD的社会心理影响。
本研究旨在探讨成年SCD患者在疼痛触发或加重因素、疼痛自我管理、SCD的社会心理经济影响以及SCD患者所采用的应对机制方面的经历。
采用定性研究设计，对成年SCD患者进行深入访谈，以探讨他们的SCD生活经历。采访了15名18岁及以上的成年SCD患者。采用内容分析法对数据进行分析。
出现了四类描述SCD患者经历的内容。这四类是：“疼痛触发和加重因素”，描述了参与者感知到的导致SCD疼痛的因素；“疼痛的自我护理疗法”，指参与者自我管理疼痛的方法；“疾病的社会心理经济影响”，指参与者对疾病对社会和经济生活影响的经历；“应对和处理疾病”，指参与者在管理和应对与疾病共存的策略方面的经历。
SCD患者经历多次疼痛发作，这会影响他们的生活质量。疼痛发作可能由各种因素触发或加重。SCD患者采用多种方法自我管理疼痛，包括休息、大量饮水或使用止痛药物。对SCD患者的护理应全面，包括疼痛的适当管理、镰状细胞疼痛家庭干预的健康教育、应对SCD社会心理影响的支持性服务以及改善与疾病共存的应对策略。
