Coping Strategies and Sense of Care Among Parents of Children Affected by Sturge–Weber Syndrome: A Cross-Sectional Study.
Background/Objectives: The diagnosis of a rare disease such as Sturge–Weber syndrome (SWS) has a profound emotional impact on parents, who must adapt to an unexpected and complex caregiving role. This study aimed to analyse the sense of caregiving among parents of children with SWS and to identify t...
| Published in: | Nursing Reports Vol. 16; no. 2; pp. 66 - 82 |
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| Main Authors: | , , , |
| Format: | research tables/charts Journal Article |
| Published: |
MDPI
Feb2026
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| Online Access: | View this record in EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=192035193&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 192035193 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 2039439X EGNT jtl: Nursing Reports issn: 2039439X maglogo: N pubinfo: dt: Feb2026 vid: 16 iid: 2 pid: 97109 pub: MDPI artinfo: ui: 192035193 192035193 192035193 10.3390/nursrep16020066 192035193 ppf: 66 ppct: 16 formats: fmt: – @attributes: type: T – @attributes: type: P tig: atl: Coping Strategies and Sense of Care Among Parents of Children Affected by Sturge–Weber Syndrome: A Cross-Sectional Study. aug: au: de Benito Alberto, Hernández Toro María Isabel, Buceta Guijo María, Sanz Gallardo María Pilar, Serrano affil: Nursing Department, Faculty of Nursing and Phisiotherapy Salus Infirmorum, Pontifical University of Salamanca, 28015 Madrid, Spain sug: subj: Parents Psychosocial Factors Sturge-Weber Syndrome Psychosocial Factors Sturge-Weber Syndrome Therapy Adaptation, Psychological Coping Human Cross Sectional Studies Descriptive Research Spain Scales Descriptive Statistics Nonparametric Statistics Bivariate Statistics Parental Role Caregivers Data Analysis Software Mann-Whitney U Test Kruskal-Wallis Test Spearman's Rank Correlation Coefficient Adult Middle Age Child Child, Preschool Infant Adolescence Multivariate Statistics Adult: 19-44 years Middle Aged: 45-64 years Child: 6-12 years Child, Preschool: 2-5 years Infant: 1-23 months Adolescent: 13-18 years ab: Background/Objectives: The diagnosis of a rare disease such as Sturge–Weber syndrome (SWS) has a profound emotional impact on parents, who must adapt to an unexpected and complex caregiving role. This study aimed to analyse the sense of caregiving among parents of children with SWS and to identify the coping strategies they adopt. Methods: A cross-sectional descriptive study was conducted with 28 parents of children with SWS in Spain. Data were collected using the Brief COPE inventory and the Finding Meaning Through Caregiving Scale (FMTCS). Descriptive statistics and non-parametric bivariate analyses were performed. Results: Acceptance (mean = 5.14; SD = 0.85) and active coping (mean = 5.07; SD = 1.12) were the most frequently used coping strategies. Higher provisional meaning in caregiving was positively associated with active coping (ρ = 0.423; p = 0.025), acceptance (ρ = 0.562; p = 0.002), and humor (ρ = 0.557; p = 0.002). As children aged, parents reported a greater sense of caregiving meaning (ρ = 0.294; p = 0.049). Conclusions: Parents of children with SWS tend to adopt active and adaptive coping strategies over time, finding increasing meaning in their caregiving role. These findings highlight the importance of nursing-led interventions aimed at supporting parental coping, meaning-making, and emotional well-being in families affected by rare diseases. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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