Masulani-Mwale C, Mathanga D, Silungwe D, Kauye F, Gladstone M
St. John of God Mental Health Services, Mzuzu, Malawi.
Department of Community Health, College of Medicine, Blantyre, Malawi.
Child Care Health Dev. 2016 Nov;42(6):871-880. doi: 10.1111/cch.12368. Epub 2016 Jul 15.
Rates of disability are high in resource poor settings with 85% of children with disabilities living in these settings. Long-term caregiving for disabled children is associated with fatigue, financial difficulties, parenting distress and other psychological issues. While such parents of children have repeatedly highlighted their feelings of discrimination, stigma and exclusion, leading to mental health issues, there is little research from the developing world addressing these issues.
This study aims to explore psychological experiences of parents caring for children with intellectual disabilities; understand their mechanisms of coping and their psychosocial needs in Malawi.
This study used a qualitative phenomenological design. We purposively sampled parents who had children diagnosed with intellectual disability from two clinics in two cities in Malawi. Between January 2015 and March 2015, we conducted 10 focus group discussions and four in-depth interviews. All ethical study procedures were carefully followed. All interviews were tape-recorded, transcribed and translated from vernacular to English. Thematic approach of data analysis was adopted to understand the data.
Caring for intellectually disabled children comes with a number of challenges. Parents have limited access to services for their children let alone for their own psychological issues; they experience stigma and discrimination, have mental health issues resulting from the caring role, have suicidal ideas and in some cases have even been coerced by neighbours to kill their disabled child. To manage these issues, most parents cope through their spirituality.
Apart from suicide and filicide, the findings of this study are similar to those performed in other countries. It is recommended that parents' psychological issues be managed concurrently when providing services for their children. There is also a need to develop psychosocial training interventions to address the needs of the parents of these children.
在资源匮乏地区，残疾率很高，85%的残疾儿童生活在这些地区。对残疾儿童的长期照料与疲劳、经济困难、育儿困扰及其他心理问题相关。虽然这些残疾儿童的父母多次强调他们遭受歧视、耻辱和排斥的感受，进而导致心理健康问题，但发展中世界针对这些问题的研究很少。
本研究旨在探索马拉维照料智障儿童的父母的心理体验；了解他们的应对机制及其心理社会需求。
本研究采用定性现象学设计。我们从马拉维两个城市的两家诊所中，有目的地抽取了其子女被诊断为智障的父母作为样本。在2015年1月至2015年3月期间，我们进行了10次焦点小组讨论和4次深入访谈。所有符合伦理的研究程序均得到严格遵循。所有访谈均进行了录音、转录，并从当地语言翻译成英语。采用数据分析的主题方法来理解数据。
照料智障儿童面临诸多挑战。父母为子女获得服务的机会有限，更不用说解决自身的心理问题了；他们遭受耻辱和歧视，因照料角色而出现心理健康问题，有自杀念头，在某些情况下甚至受到邻居胁迫而杀害自己的残疾孩子。为应对这些问题，大多数父母通过他们的精神信仰来应对。
除了自杀和杀子问题外，本研究的结果与其他国家的研究结果相似。建议在为子女提供服务的同时，一并解决父母的心理问题。还需要制定心理社会培训干预措施，以满足这些儿童父母的需求。
