Luitwieler N, Luijkx J, Salavati M, Van der Schans C P, Van der Putten A J, Waninge A
Research Group Healthy Ageing, Allied Health Care and Nursing, Hanze University of Applied Sciences Groningen, Groningen, the Netherlands.
Department of Special Needs Education and Youth Care, University of Groningen, Groningen, the Netherlands.
Heliyon. 2021 Jun 24;7(7):e07372. doi: 10.1016/j.heliyon.2021.e07372. eCollection 2021 Jul.
Family quality of life (FQoL) of families that have a child with severe to profound intellectual disabilities (SPID) is an important and emerging concept, however, related variables are inconclusive.
To gain a better understanding of variables related to the FQoL of families that have a child with SPID, variables related to the FQoL of families that have a child with intellectual disabilities (ID) were systematically reviewed.
A search strategy was performed in five databases. Critical appraisal tools were employed to evaluate the quality of both quantitative and qualitative studies. Data extraction and synthesis occurred to establish general study characteristics, variables, and theoretical concepts. Variables were categorised into four key concepts of the FQoL: systemic concepts, performance concepts, family-unit concepts and individual-member concepts.
A total of 40 studies were retrieved with 98 variables. Quality scores ranged from 7 to 13 (quantitative) and 5 to 13 (qualitative) out of 13 and 14 points, respectively. Five out of the 40 studies (13%) focused on individuals with SPID. Variables related positively or negatively to the FQoL, and were categorised within systemic concepts (n = 3); performance concepts (n = 11); family-unit concepts (n = 26); and individual-member concepts (n = 58).
Several variables were found to be (inter)related to the FQoL of families that have a child with ID. A contrasting picture emerged regarding the impact of a disability in relation to transitional phases. However, studies which include families of children with SPID were minimal, therefore, it remained ambiguous to what extent the identified variables apply to these families.
家中有重度至极重度智力残疾（SPID）儿童的家庭的家庭生活质量（FQoL）是一个重要且正在兴起的概念，然而，相关变量尚无定论。
为了更好地理解与家中有SPID儿童的家庭的FQoL相关的变量，对与家中有智力残疾（ID）儿童的家庭的FQoL相关的变量进行了系统综述。
在五个数据库中执行了检索策略。采用批判性评价工具来评估定量和定性研究的质量。进行了数据提取和综合，以确定一般研究特征、变量和理论概念。变量被分为FQoL的四个关键概念：系统概念、绩效概念、家庭单位概念和个体成员概念。
共检索到40项研究，包含98个变量。质量得分在13分制中，定量研究为7至13分，定性研究为5至13分（满分分别为13分和14分）。40项研究中有5项（13%）关注SPID个体。与FQoL呈正相关或负相关的变量，被归类在系统概念（n = 3）；绩效概念（n = 11）；家庭单位概念（n = 26）；个体成员概念（n = 58）中。
发现几个变量与家中有ID儿童的家庭的FQoL（相互）相关。关于残疾在过渡阶段的影响出现了不同的情况。然而，纳入有SPID儿童家庭的研究很少，因此，所确定的变量在多大程度上适用于这些家庭仍不明确。
