St. Catherine University, Henrietta Schmoll School of Health Sciences, St. Paul, Minnesota, USA.
Kafika House, Arusha, Tanzania.
Child Care Health Dev. 2024 Mar;50(2):e13232. doi: 10.1111/cch.13232.
In Tanzania, about 600 000 youth between 5 and 24 years old have a disability. Individuals with disabilities face numerous obstacles due to social stigma. The aim of this formative evaluation is to assess how caregivers of children with correctable disabilities (e.g., cleft lip/palate, club foot, and burn scar contractures) in Tanzania perceive their community's acceptance of their child before and after surgical treatment. Semi-structured interviews were conducted with 80 caregivers of children with disabilities treated at Kafika House in Arusha, Tanzania. The constant comparative method identified themes regarding the caregivers' feelings on their child's functional abilities and experiences of stigma in their community. Caregiver perceptions of stigma before and after surgical treatment were categorized and quantified as 'positive', 'neutral' and 'negative'. Thematic analysis of the 80 interviews resulted in five major themes: (1) stigma and acceptance (pre-treatment) and (2) post-treatment; (3) functional abilities (pre-treatment) and (4) post-treatment; and (5) emotional impact (pre- and post-treatment). These themes indicate caregivers and their children experience a range of emotional impacts before and after treatment, more severe stigma before treatment, and overall better social, emotional and functional status after treatment. Frequency analysis of caregiver experiences indicated that stigma experienced by children and their families decreased from 75% before surgical treatment to 2.5% after surgery. Surgical intervention and rehabilitation of physical disabilities mitigated experiences of social stigma for both children and their caregivers. Findings support the need for expanded treatment of correctable disabilities, larger investments in community-based rehabilitation programmes and further interventions to support stigmatized parents and their children.
在坦桑尼亚，约有 60 万 5 至 24 岁的青年有残疾。残疾人士由于社会污名而面临诸多障碍。本次形成性评价的目的是评估坦桑尼亚可纠正残疾儿童（如唇裂/腭裂、马蹄足和烧伤瘢痕挛缩）的照顾者在手术治疗前后如何感知其所在社区对其孩子的接受程度。对在坦桑尼亚阿鲁沙的 Kafika House 接受治疗的 80 名残疾儿童的照顾者进行了半结构化访谈。采用恒比法确定了照顾者对其孩子功能能力的感受以及在社区中受到污名化的经历的主题。根据照顾者对手术前后孩子的污名化看法进行分类和量化，分为“积极”、“中立”和“消极”。对 80 次访谈的主题分析得出了五个主要主题：（1）污名化和接受（治疗前）和（2）治疗后；（3）功能能力（治疗前）和（4）治疗后；和（5）情感影响（治疗前和治疗后）。这些主题表明，治疗前后照顾者及其子女经历了一系列的情感影响，治疗前的污名化更严重，治疗后的社会、情感和功能状况总体上更好。对照顾者经历的频率分析表明，儿童及其家庭在手术治疗前经历的污名化从 75%下降到手术后的 2.5%。手术干预和身体残疾康复减轻了儿童及其照顾者的社会污名化体验。研究结果支持扩大可纠正残疾的治疗范围，增加对社区为基础的康复方案的投资，并进一步采取干预措施，支持受污名化的父母及其子女。
