Markham Chris, Dean Taraneh
School of Health Sciences and Social Work, University of Portsmouth, Portsmouth, UK.
Int J Lang Commun Disord. 2006 Mar-Apr;41(2):189-212. doi: 10.1080/13682820500221485.
The true impact of speech and language difficulties (SaLD) on children's lives and the effectiveness of intervention is unknown. Within other fields of paediatric healthcare, clinicians and policy-makers are increasingly emphasizing the utility of Health-Related Quality of Life (HRQoL) studies and measures. SaLT has a variety of measures to assess and treat children's 'quantity' of life, but also requires measures that allow it to measure and even target their Quality of Life.
To provide novel, primary data on the HRQoL of children with speech and/or language difficulties.
METHODS & PROCEDURES: The study used a qualitative methodology to begin the process of developing knowledge about HRQoL in children with SaLD. Focus group interviews were held with parents and professional carers of children with SaLD, and participants were encouraged to reflect on their experiences and beliefs around HRQoL issues for these children. The discussions within these groups were tape-recorded and analysed using the principles of grounded theory and content analysis.
OUTCOMES & RESULTS: Analysis of tape-recorded data identified ten descriptive themes related to children with SaLDs HRQoL. These themes were labelled: Inclusion; Behaviour and reactions of others; Education and awareness; Friendships and family relations; Schooling; The child's needs; Dependence/independence; Quality of care; Choice and potential; and Variability. The results can be seen as lying on a spectrum, with factors outside of the child at one pole, the individual child's characteristics at the other, and the interaction between the child and significant others in the middle. A number of the themes reflected a common belief, across all groups, that the HRQoL of children with SaLD is influenced by the behaviours, attitudes and beliefs of people surrounding them. In addition, participants' beliefs that the quality of a child's social integration, relationships and care are also related to their HRQoL.
These are encouraging results, indicating that children with SaLD experience HRQoL issues associated with their communication impairments. The results support the suggestion that speech and language therapists should ensure that their assessments and interventions account for both a child's impairment and also factors related to well-being reflected in the themes presented here. However, this was also a small-scale study and consequently further research of this type, with a larger and more varied population, is necessary so that HRQoL issues for all clinical sub-groups of children with SaLD can be explored.
言语和语言障碍(SaLD)对儿童生活的真正影响以及干预的效果尚不清楚。在儿科医疗保健的其他领域,临床医生和政策制定者越来越强调健康相关生活质量(HRQoL)研究和测量的效用。言语和语言治疗(SaLT)有多种措施来评估和治疗儿童的“生活质量”,但也需要能够测量甚至针对他们生活质量的措施。
提供关于有言语和/或语言障碍儿童的HRQoL的新的原始数据。
本研究采用定性方法,开始了解有SaLD儿童的HRQoL的过程。对有SaLD儿童的家长和专业护理人员进行了焦点小组访谈,并鼓励参与者反思他们对这些儿童HRQoL问题的经历和信念。这些小组内的讨论进行了录音,并使用扎根理论和内容分析的原则进行了分析。
对录音数据的分析确定了与有SaLD儿童的HRQoL相关的10个描述性主题。这些主题被标记为:融入;他人的行为和反应;教育与认知;友谊和家庭关系;学校教育;儿童需求;依赖/独立;护理质量;选择与潜力;以及变异性。结果可以看作是一个连续体,一端是儿童之外的因素,另一端是儿童个体的特征中间是儿童与重要他人之间的相互作用。许多主题反映了所有群体的一个共同信念,即有SaLD儿童的HRQoL受到周围人的行为、态度和信念的影响。此外,参与者认为儿童的社会融合、关系和护理质量也与他们的HRQoL有关。
这些结果令人鼓舞,表明有SaLD的儿童经历了与其沟通障碍相关的HRQoL问题。结果支持了言语和语言治疗师应确保其评估和干预既要考虑儿童的障碍,也要考虑此处呈现的主题中反映的与幸福感相关的因素的建议。然而,这也是一项小规模研究,因此有必要对更大、更多样化的人群进行此类进一步研究,以便能够探索所有有SaLD临床亚组儿童的HRQoL问题。