Onwuakagba IU, Okoye EC, Simon LA, Okonkwo UP, Nwankwo MJ

<strong>Materials and methods</strong> <em><strong>Study design and Sample</strong></em> This cross-sectional study involved 90 parents of children with CP consecutively recruited from physiotherapy out-patient clinics of seven purposively selected public tertiary hospitals in different states in southeast Nigeria. The hospitals were chosen due to their potential to yield a large sample size. The ethical approval for the study was sought and obtained from the Ethical Review Committee of XXXX (blinded) before the commencement of the data collection. Informed consent was got from each participant after a thorough explanation of the study protocol and aims to them. The participants were adult (18 years and above) primary caregivers who were well-oriented in person, place and time. A sample size of 90 had 84% power to detect a moderate change of 0.3 at alpha level of significance of 0.05. The sample size was calculated using G-power statistical package 3.0.10 (Faul et al., 2007). Data collection lasted for four months from February to May 2021. The Parents’ Attitude Scale, the Caregivers Strain Index and the Family Need Assessment Questionnaires were used to assess the attitude, burden, and needs of the participants respectively. The questionnaires were either self- or researcher-administered to each participant depending on the participant’s preference. <br> <em><strong>Research Instruments</strong></em><em>. </em> <em>Parents’ Attitude Scale:</em> This is a 15-item survey questionnaire designed to assess parental attitudes towards their children. The questionnaire covered parental attitudes and feelings towards their children’s disability, competency and independency. Its items were either positive or negative, and are rated using a 5-point Likert-type scale. The positive items are scored from 5 (strongly agree) to 1 (strongly disagree) while the negative items are scored from 1 (strongly agree) to 5 (strongly disagree). The levels of attitudes are got by extracting the range for each item, and dividing by three (5–1 = 4, 4÷3 = 1.33). The quotient (1.33) is then serially added to 1 (the lowest score) to get the following ranges: 3.68–5 (positive attitude), 2.34–3.67 (neutral attitude), and 2.33–1 (negative attitude). The questionnaire has a reliability coefficient of 0.815 (Al-Dababneh &amp; Al-Zboon, 2018). <br> <em>The Modified Caregiver Strain Index</em><strong>:</strong> This is a questionnaire with 13 items developed in 2003 to measure burden/strain associated with caregiving. The major domains are financial, physical, psychological, social, and personal, which are each represented by at least an item. Each 'yes' response is scored 2; 'sometimes' is scored 1; and ‘no’ is scored 0. Scoring ranges from 26 to 0 with a higher score indicating a higher level of caregiver strain. The questionnaire has a reliability coefficient of 0.90 (Thornton &amp; Travis, 2003; Travis et al., 2003). <br> <em>Family Needs Survey</em><strong>:</strong> This is a 35-item questionnaire used in assessing the needs of parents of children with cerebral palsy (Bailey Jr &amp; Simeonsson, 1988). It is grouped into six areas of needs: information, support, explaining to others, community services, financial needs, and family functioning. Each item is rated on a 3-point scale: 1 =‘I definitely do not need help’, 2 =‘Not sure’, and 3 =‘I definitely need help’. The scores are summated to get the composite score. Higher scores indicate greater needs. It has displayed adequate 6-month period test-retest reliability (0.67-0.81), and internal consistency (Cronbach’s alpha=0.91 for the total score; 0.65-0.86 for the six areas of need) (Sexto et al., 1992). <br> <em><strong>Data analysis</strong></em> Data obtained were analysed using the SPSS version 21<em>.</em> The socio-demographic profiles of the participants and the questionnaire scores were summarised using descriptive statistics (percentages, frequency counts, means, range, and standard deviation). The gender and occupational differences in attitude, burden, and needs among the participants were assessed using Mann Whitney U and Kruskal-Wallis tests respectively. The relationships between attitude, burden, needs, age, and educational attainment of the participants were assessed using Spearman correlation at 0.05 level of significance.

材料与方法

### 研究设计与研究对象
本横断面研究共纳入90名脑瘫（Cerebral Palsy, CP）患儿家长，研究对象连续招募自尼日利亚东南部不同州7家目的性遴选的公立三级医院物理治疗门诊。选择上述医院的原因在于其具备提供大样本量的潜力。本研究于数据收集启动前，已获得XXXX（隐去信息）伦理审查委员会的伦理批准。研究人员向每名参与者详细阐释研究方案与研究目的后，获取了其知情同意。纳入的参与者均为年满18周岁的主要照料者，且定向力完整（对人物、地点、时间认知清晰）。本研究采用G*Power 3.0.10统计软件（Faul等，2007）计算样本量，最终确定90例样本量在α=0.05的显著性水平下，拥有84%的检验效能以检测出0.3的中等程度效应量变化。数据收集工作于2021年2月至5月期间开展，为期4个月。本研究分别采用《家长态度量表（Parents’ Attitude Scale）》、《照料者负担指数量表（Caregivers Strain Index）》与《家庭需求评估问卷（Family Need Assessment Questionnaires）》对参与者的态度、照料负担与需求进行评估。根据参与者意愿，问卷可由其自行填写或由研究人员协助完成。

### 研究工具
1. **家长态度量表（Parents’ Attitude Scale）**：该量表为包含15个条目的调查问卷，用于评估家长对其子女的态度。量表内容涵盖家长对子女残疾状况、能力与独立性的态度及感受。条目分为正向与反向两类，采用5点李克特（Likert）式评分法：正向条目按“非常同意（5分）”至“非常不同意（1分）”计分，反向条目则按“非常同意（1分）”至“非常不同意（5分）”计分。态度水平通过计算各条目得分范围并除以3（5–1 = 4，4÷3 ≈ 1.33）确定，将该商值（1.33）依次叠加至最低得分（1分），得到如下分级区间：3.68~5分为正向态度，2.34~3.67分为中性态度，1~2.33分为负向态度。该量表的信度系数为0.815（Al-Dababneh & Al-Zboon, 2018）。
2. **改良版照料者负担指数量表（Modified Caregiver Strain Index）**：该量表于2003年编制，共包含13个条目，用于评估照料者所承受的照料负担与压力。其主要维度包括经济、躯体、心理、社交与个人层面，每个维度至少对应1个条目。评分规则为：“是”计2分，“有时”计1分，“否”计0分，总得分范围为0~26分，得分越高表示照料者负担越重。该量表的信度系数为0.90（Thornton & Travis, 2003; Travis et al., 2003）。
3. **家庭需求调查问卷（Family Needs Survey）**：该量表共包含35个条目，用于评估脑瘫患儿家长的需求（Bailey Jr & Simeonsson, 1988）。量表分为6个需求维度：信息支持、照料支持、向他人解释病情、社区服务、经济需求与家庭功能。每个条目采用3点评分法：1 =“我完全不需要帮助”，2 =“不确定”，3 =“我非常需要帮助”。将所有条目得分相加得到总得分，得分越高表示需求程度越高。该量表具备良好的6个月重测信度（0.67~0.81）与内部一致性（总量表Cronbach’s α系数为0.91，6个维度的Cronbach’s α系数为0.65~0.86）（Sexto et al., 1992）。

### 数据分析
采用SPSS 21.0版本对获取的数据进行分析。采用描述性统计（百分比、频数、均值、极差与标准差）对参与者的社会人口学特征及问卷得分进行汇总。分别采用曼-惠特尼U检验与克鲁斯卡尔-沃利斯检验评估参与者在态度、负担与需求方面的性别与职业差异。采用斯皮尔曼相关性分析在α=0.05的显著性水平下，评估参与者的态度、负担、需求与年龄、受教育程度之间的相关性。