Experiences, Outcomes and Unmet Needs of Caregivers of Children With Cerebral Palsy

Stress

The PSS-14 is short and easy adaptation of the original Perceived Stress Scale (PSS), with the original author being Cohen, S. The European Spanish adaptation was conducted by Remor, E. The PSS measures the degree to which individuals perceive life situations as stressful over the past month, focusing on subjective control over unpredictable events and the distress associated with perceived lack of control. The PSS is more closely related to subjective evaluations of life events than objective measures of stressors (18). The PSS-14 European Spanish version will be used and consists of 14 items scored from 0 up to 4 (0=never, 1 = rarely 2= sometimes 3= usually 4 =almost always). The total scores on the scale can range from 0 (no stress) to 56 (extreme stress). The European Spanish version PSS (14-item) demonstrated adequate reliability (internal consistency, alpha = .81, and test-retest, r = .73), validity (concurrent), and sensitivity

The Quality of Life

To assess the impact of pediatric chronic health conditions on caregivers and the family, the Spanish version of the PedsQL™ Family Impact Module will be used. This module employs a multidimensional parent self-report to evaluate physical, emotional, social, and cognitive functioning, as well as communication and worry. The module can be completed within 5-10 minutes The PedsQL-FIM It is a 36-item with an internal consistency reliability of α = 0.97 (21). It assesses 8 main factors: physical functioning (6 items), emotional functioning (5 items), social functioning (4 items), cognitive functioning (4 items), communication (3 items), worry (5 items), daily activities (3 items) and family relationships (5 items). The answers are given on a 5-point Likert scale (0 = it is never a problem, 4 = it is almost always a problem) and are reversed scored and linearly transformed to a 0-100 scale (0 = 100, 1 = 75, 2 = 50, 3 = 25, 4 = 0). A greater score indicates better functioning.

Burden

To asses caregiver burden, the Zarit Burden Interview will be used. The Zarit Burden Interview is a widely used self-report instrument for measuring caregiver burden. ZBI assesses caregivers´ perceptions of burden that may inadvertently affect their health, personal, social or financial wellbeing. Caregivers are requested to assess the level of burden they experience while caring for a loved one. Burden is defined as the degree to which a caregiver perceives negative effects on their emotional and physical health, social life, and finances, which may hinder their ability to provide care. Responses vary from "not at all" to "extremely." It consists of 22 items, with the total score calculated by summing the scores of all the indicated items. It is suggested that a score from 0 to 21 means no to mild burden, 21 to 40 indicates mild to moderate burden, 41 to 60 indicates moderate to severe burden, and more than 61 means severe burden.