Development and psychometric properties of the caregiver sense of competence questionnaire for caregivers of people with multiple sclerosis (CareSoC-MS): a cross-sectional study.

OBJECTIVES

Multiple sclerosis (MS) competence is crucial for caregivers of people with MS (PwMS). Having validated MS-specific tools to measure caregivers' Sense of Competence (SoC) is fundamental to understand if they are coping with their role and/or need support and training. The aim of the study was to develop and validate the Caregiver SoC questionnaire for caregivers of PwMS (CareSoC-MS), a self-report questionnaire, to assess SoC in MS caregivers.

DESIGN

Cross-sectional study.

SETTING

Italy.

PARTICIPANTS

191 MS caregivers (sex: 48.7% females; age: 58.6±12.6 years; education: 62.8% high-school/university) self-administered the 27-item CareSoC-MS questionnaire. Psychometric evaluation consisted of analyses of structural validity and reliability, construct validity and discriminant validity. The final version of the CareSoC-MS includes 14 items covering 4 relevant SoC domains: L1-Psychological well-being, L2-Impact on personal social life, L3-Efficacy of the provided care and L4-Satisfaction with one's own performance as a caregiver.

RESULTS

The 14-item CareSoC-MS is a psychometrically valid questionnaire with no ceiling or floor effects. Test-retest reliability analysis showed significant intraclass correlation coefficients for L1 (0.80), L2 (0.96), L3 (0.88) and L4 (0.61). L1 and L2 were correlated with self-reported measures of burden, anxiety and depression. Care recipient disability was correlated with L1 and L2, caregiver sex with L1, and caregiver age with L3.

CONCLUSIONS

The CareSoC-MS is a valid self-report questionnaire that can be used in clinical practice and research. CareSoC-MS could inform healthcare professionals about how informal caregivers feel capable to face the caregiving requests and, in turn, could help prevent or postpone caregiver burden.