Nakamanya Sarah, Siu Godfrey E, Lassman Rachel, Seeley Janet, Tann Cally J
MRC/UVRI Uganda Research Unit on AIDS , Entebbe , Uganda .
Disabil Rehabil. 2015;37(16):1470-6. doi: 10.3109/09638288.2014.972582. Epub 2014 Oct 17.
The study investigated maternal experiences of caring for a child affected by neurological impairment after neonatal encephalopathy (NE) ("birth asphyxia") in Uganda.
Between September 2011 and October 2012 small group and one-on-one in-depths interviews were conducted with mothers recruited to the ABAaNA study examining outcomes from NE in Mulago hospital, Kampala. Data were analysed thematically with the aid of Nvivo 8 software.
Mothers reported caring for an infant with impairment was often complicated by substantial social, emotional and financial difficulties and stigma. High levels of emotional distress, feelings of social isolation and fearfulness about the future were described. Maternal health-seeking ability was exacerbated by high transport costs, lack of paternal support and poor availability of rehabilitation and counselling services. Meeting and sharing experiences with similarly affected mothers was associated with more positive maternal caring experiences.
Mothering a child with neurological impairment after NE is emotionally, physically and financially challenging but this may be partly mitigated by good social support and opportunities to share caring experiences with similarly affected mothers. A facilitated, participatory, community-based approach to rehabilitation training may have important impacts on maximising participation and improving the quality of life of affected mothers and infants. Implications for Rehabilitation Caring for an infant with neurological impairment after NE in Uganda has substantial emotional, social and financial impacts on families and is associated with high levels of emotional stress, feelings of isolation and stigma amongst mothers. Improved social support and the opportunity to share experiences with other similarly affected mothers are associated with a more positive maternal caring experience. High transport costs, lack of paternal support and poor availability of counselling and support services were barriers to maternal healthcare seeking. Studies examining the feasibility, acceptability and impact of early intervention programmes are warranted to maximise participation and improve the quality of life for affected mothers and their infants.
本研究调查了乌干达新生儿脑病（“出生窒息”）后照顾神经功能受损儿童的母亲的经历。
2011年9月至2012年10月期间，对招募到ABAaNA研究中的母亲进行了小组和一对一的深入访谈，该研究在坎帕拉穆拉戈医院调查新生儿脑病的结局。借助Nvivo 8软件对数据进行了主题分析。
母亲们报告称，照顾有损伤的婴儿常常因巨大的社会、情感和经济困难以及耻辱感而变得复杂。她们描述了高度的情绪困扰、社会孤立感以及对未来的恐惧。高昂的交通成本、缺乏父亲的支持以及康复和咨询服务的匮乏加剧了母亲寻求医疗保健的困难。与同样受影响的母亲见面并分享经历与更积极的母亲照顾体验相关。
在新生儿脑病后照顾神经功能受损的孩子在情感、身体和经济方面都具有挑战性，但良好的社会支持以及与同样受影响的母亲分享照顾经历的机会可能会部分缓解这种情况。一种便利的、参与性的、基于社区的康复训练方法可能对最大限度地提高参与度以及改善受影响母亲和婴儿的生活质量产生重要影响。对康复的启示在乌干达，新生儿脑病后照顾神经功能受损的婴儿对家庭有重大的情感、社会和经济影响，并且与母亲中高度的情绪压力、孤立感和耻辱感相关。改善社会支持以及与其他同样受影响的母亲分享经历的机会与更积极的母亲照顾体验相关。高昂的交通成本、缺乏父亲的支持以及咨询和支持服务的匮乏是母亲寻求医疗保健的障碍。有必要开展研究以检验早期干预项目的可行性、可接受性和影响，以最大限度地提高参与度并改善受影响母亲及其婴儿的生活质量。
