Opoku Paul, Osei-Tutu Annabella, Oti-Boadi Mabel
Department of Psychology, University of Ghana, Accra, Ghana.
J Community Genet. 2023 Dec;14(6):565-574. doi: 10.1007/s12687-023-00662-y. Epub 2023 Aug 15.
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.
照顾患有遗传疾病儿童的照料者可能会经历心理社会困扰，而照料发生的环境可能会使这种困扰更加复杂。在加纳等低收入和中等收入国家，很少有研究探讨照顾患有遗传疾病儿童的照料者的心理社会困扰及所获得的支持。本研究的目的是调查在加纳首都阿克拉的城市环境中照顾患有遗传疾病儿童的心理社会影响。我们对17名照料者进行了个人访谈，这些照料者照顾患有各种遗传疾病的儿童，包括白化病、爱德华氏综合征、成骨不全症、镰状细胞病和先天性脊椎骨骺发育不良。对数据的主题分析揭示了心理社会影响的三个主要主题，包括：（1）自责、内疚和羞耻；（2）睡眠和情绪障碍；（3）歧视和污名化。我们观察到关于支持的三个主题：（1）心理支持；（2）家庭和社区支持；（3）机构支持。参与者报告称，心理学家等专业人员提供的支持有限。讨论集中在照料者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。
