The Effects of Sickle Cell Disease on the Quality of Life: A Focus on the Untold Experiences of Parents in Tanzania.
The Effects of Sickle Cell Disease on the Quality of Life: A Focus on the Untold Experiences of Parents in Tanzania.
复制标题
镰状细胞疾病对生活质量的影响：关注坦桑尼亚父母的无数经历。
DOI：
10.3390/ijerph19116871
复制
发表时间：
2022-06-04
影响因子：
--
通讯作者：
Sirili, Nathanael
中科院分区：
文献类型：
--
作者：
Kilonzi, Manase;Mwakawanga, Dorkasi L.;Felician, Fatuma Felix;Mlyuka, Hamu J.;Chirande, Lulu;Myemba, David T.;Sambayi, Godfrey;Mutagonda, Ritah F.;Mikomangwa, Wigilya P.;Ndunguru, Joyce;Jonathan, Agnes;Ruggajo, Paschal;Minja, Irene Kida;Balandya, Emmanuel;Makani, Julie;Sirili, Nathanael
坦桑尼亚是全球镰状细胞病（SCD）负担最重的五个国家之一。尽管在尼日利亚和美国等其他国家，镰状细胞病对生活质量的影响已有文献记载，但在坦桑尼亚，这方面的了解却很少。因此，本研究着重评估镰状细胞病对患镰状细胞病儿童及其父母生活质量的影响。该研究采用定性研究方法，对有目的地挑选出的、孩子患镰状细胞病且已使用羟基脲（HU）三年以上的家长进行访谈。在坦桑尼亚达累斯萨拉姆的穆希比利卫生与联合科学大学（MUHAS），对11名患镰状细胞病儿童的家长进行了深度访谈。访谈使用了半结构化的访谈提纲。访谈进行了录音、转录，并进行了主题分析。归纳出三个主题，包括心理社会影响：家庭冲突与离婚、受教育机会有限、压力与恐惧；经济影响：就业受限、效率和生产力下降、失业以及缺乏自理费用；身体影响：身体残疾与依赖、频繁发病带来的负担。患镰状细胞病的儿童及其父母承受着该疾病在心理社会、经济和身体方面的影响。应采取适当干预措施，尽量减少这些已观察到的影响，以此提高患镰状细胞病个体及其照料者的生活质量。
Tanzania is among the top five countries with a high burden of sickle cell disease (SCD) in the world. Even though the effects of SCD on quality of life have been documented in other countries including Nigeria and the United States of America, few are known from Tanzania. Therefore, this study focused on evaluating the effects of SCD on the quality of life among children living with SCD and their parents. The study employed a qualitative approach to interview purposively selected parents of children who have lived with SCD and have used hydroxyurea (HU) for more than 3 years. The in-depth interviews were conducted with 11 parents of children with SCD at the Muhimbili University of Health and Allied Sciences (MUHAS) in Dar-es-salaam, Tanzania. A semi-structured interview guide was used. Interviews were audio-recorded, transcribed, and thematically analyzed. Three themes were generated including psycho-social effects: family conflicts and divorce, limited access to education, stress and fear; financial effects: Employment limitation, reduced efficiency and productivity, loss of job and lack of self-keeping expenses; and physical effects: physical disability and dependence, and burden of the frequent crisis. Children living with SCD and their parents suffer psycho-social, financial, and physical impacts of the disease. Appropriate interventions should be introduced to minimize the observed effects as ways of improving the quality of life of the individuals living with SCD and their caregivers.
登录
查看更多内容
DOI：
10.11604/pamj.2020.36.227.24636
发表时间：
2020
期刊：
The Pan African medical journal
影响因子：
--
作者：
Ogamba CF;Akinsete AM;Mbaso HS;Adesina OA
通讯作者：
Adesina OA
DOI：
10.1186/s12962-021-00315-2
发表时间：
2021-09-16
期刊：
Cost effectiveness and resource allocation : C/E
影响因子：
--
作者：
Ravangard R;Jalali FS;Bayati M;Palmer AJ;Jafari A;Bastani P
通讯作者：
Bastani P
DOI：
10.3390/children9010015
发表时间：
2021-12-27
期刊：
Children (Basel, Switzerland)
影响因子：
--
作者：
Alhazmi A;Hakami K;Abusageah F;Jaawna E;Khawaji M;Alhazmi E;Zogel B;Qahl S;Qumayri G
通讯作者：
Qumayri G
影响因子：
2.1
作者：
Olatunya, Oladele Simeon;Ogundare, Ezra Olatunde;Aderiye, Odunayo
通讯作者：
Aderiye, Odunayo
影响因子：
2.1
作者：
Ekwochi, Uchenna;Osuorah, D. Chidiebere;Odetunde, O. Israel
通讯作者：
Odetunde, O. Israel