Caregiver, Cerebral Palsy Infantile
Conditions
Keywords
Caregivers, Cerebral Palsy, Mixed-Method Research, Quality of Life, Parenting Stress
Brief summary
Cerebral palsy (CP ) is one of the most prevalent motor disabilities in childhood, significantly impacting both children and their caregivers. This study explores the experiences, psychological well-being, and unmet needs of caregivers of children with CP. Using an explanatory sequential design (QUAN → QUAL), first it will be assessed burden, stress levels, and quality of life of caregivers through standardized questionnaires (PedsQL-FIM , ZBI , PSS-14 ).
Detailed description
Before the recruitment begins, the principal investigator will present the project to the pediatric service of the Arnau de Vilanova University Hospital of Lleida (HUAV). During medical consultations, the pediatric service will inform eligible participants about the study. If the caregiver agrees to participate, they will give consent for the pediatric service to share their contact details with the research team. The investigators will then contact the participant to explain the project in detail, schedule a first meeting to sign the Informed Consent, and complete the initial questionnaires. The Informed Consent will include the first author's contact information so that participants can address any questions or concerns about the study. Additionally, participants who sign the informed consent will be asked to provide their contact information for potential follow-up regarding the qualitative interview. In the first meeting, participants who meet the inclusion criteria and have signed the informed consent will be directed to a study homepage hosted on the university's website. This website will provide a link to REDCap (Research Electronic Data Capture), a secure platform specifically designed for collecting research data (PedsQL-FIM, ZBI, PSS-14). Participants' sociodemographic data will include descriptive information such as age, sex, household income, among others
Interventions
None listed
Sponsors
Universitat de Lleida
Study design
Observational model
OTHER
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* \>18 years old * Being a caregiver of a child with Cerebral Palsy * Spanish/Catalan speaking * Willing to talk about their experiences and be audio/video-recorded. * Accept and sign the informed consent form
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Stress | Day 1 | 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 |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| The Quality of Life | Day 1 | 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 | Day 1 | 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. |
Contacts
Primary ContactCLAUDIA ARUMI, Msc
Outcome results
None listed