DOI: 10.6084/m9.figshare.20109812.v5
title: Attitude, burden, and needs of parents of children with cerebral palsy in a poor-resource country

description: <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 & 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 & 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 & 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.