Psychosocial impacts of caring for a child with a genetic disorder in Accra, Ghana.

IF 1.5 Q4 GENETICS & HEREDITY Journal of Community Genetics Pub Date : 2023-12-01 Epub Date: 2023-08-15 DOI:10.1007/s12687-023-00662-y
Paul Opoku, Annabella Osei-Tutu, Mabel Oti-Boadi
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引用次数: 1

Abstract

Caregivers caring for a child with a genetic condition may experience psychosocial distress, which may be compounded by the context in which the caring takes place. Few studies have examined psychosocial distress and support among caregivers caring for a child with a genetic disorder in low-middle-income countries such as Ghana. The purpose of the current study was to investigate the psychosocial impacts of caring for a child with a genetic disorder in an urban setting in Ghana's capital, Accra. We conducted individual interviews among 17 caregivers who were taking care of children with various genetic disorders including, albinism, Edward's syndrome, osteogenesis imperfecta, sickle cell disease, and spondyloepiphyseal dysplasia congenita. Thematic analysis of the data revealed three main themes on the psychosocial impacts, including: (1) self-blame, guilt, and shame; (2) sleep and mood disturbances; and (3) discrimination and stigmatization. We observed three themes about support: (1) psychological support; (2) family and community support; and (3) institutional support. Participants reported limited support from professionals such as psychologists. Discussion focuses on the supportive care needs of caregivers and implications for genetic counselling awareness, advocacy, and training.

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加纳阿克拉照顾遗传病患儿的社会心理影响。
照顾遗传病患儿的照顾者可能会经历心理社会困扰,而这种困扰可能会因照顾环境而加剧。在加纳等中低收入国家,很少有研究对照顾遗传病患儿的照顾者的社会心理压力和支持情况进行调查。本研究旨在调查在加纳首都阿克拉的城市环境中,照顾遗传病患儿对社会心理的影响。我们对 17 名照顾患有各种遗传疾病(包括白化病、爱德华综合征、成骨不全症、镰状细胞病和先天性脊柱软骨发育不良)儿童的照顾者进行了个别访谈。对数据进行的主题分析揭示了社会心理影响的三大主题,包括:(1) 自责、内疚和羞愧;(2) 睡眠和情绪障碍;(3) 歧视和侮辱。我们观察到有关支持的三个主题:(1) 心理支持;(2) 家庭和社区支持;(3) 机构支持。参与者报告称,来自心理学家等专业人士的支持有限。讨论的重点是护理人员的支持性护理需求以及对遗传咨询意识、宣传和培训的影响。
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来源期刊
Journal of Community Genetics
Journal of Community Genetics GENETICS & HEREDITY-
CiteScore
3.30
自引率
5.30%
发文量
54
期刊介绍: The Journal of Community Genetics is an international forum for research in the ever-expanding field of community genetics, the art and science of applying medical genetics to human communities for the benefit of their individuals. Community genetics comprises all activities which identify persons at increased genetic risk and has an interest in assessing this risk, in order to enable those at risk to make informed decisions. Community genetics services thus encompass such activities as genetic screening, registration of genetic conditions in the population, routine preconceptional and prenatal genetic consultations, public education on genetic issues, and public debate on related ethical issues. The Journal of Community Genetics has a multidisciplinary scope. It covers medical genetics, epidemiology, genetics in primary care, public health aspects of genetics, and ethical, legal, social and economic issues. Its intention is to serve as a forum for community genetics worldwide, with a focus on low- and middle-income countries. The journal features original research papers, reviews, short communications, program reports, news, and correspondence. Program reports describe illustrative projects in the field of community genetics, e.g., design and progress of an educational program or the protocol and achievement of a gene bank. Case reports describing individual patients are not accepted.
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