Evaluating the burden of caregivers of patients with visual impairment: a multicenter pilot study in Italian visual rehabilitation centers

Gianni Virgili^1,2Francesco Ferron¹Federico Bartolomei³Ruth Marie Antoinette Van Nispen⁴Eliana Costanzo^2*Giovanni Luca Ciaffoni³Emanuela Rellini^5,6Simona Turco^5,7Marina Piepoli⁸Simona Di Pietro⁹Stefania Fortini^5,6

• ¹Department NEUROFARBA, University of Florence, Italy, Florence, Italy
• ²IRCCS Fondazione Bietti, Rome, Italy
• ³Istituto dei Ciechi F. Cavazza, Bologna, Italy, Bologna, Italy
• ⁴Amsterdam UMC, Vrije Universiteit, dept. Ophthalmology and Amsterdam Public Health research institute, Amsterdam, the Netherlands, Amsterdam, Netherlands
• ⁵National Centre of Services and Research for the Prevention of Blindness and Rehabilitation of Low Vision Patients, IAPB Italia Onlus, Rome, Italy., Rome, Italy
• ⁶Ophthalmology Unit, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy., Rome, Italy
• ⁷Clinical Psychology Unit, Fondazione Policlinico Universitario Agostino Gemelli IRCCS, Rome, Italy, Rome, Italy
• ⁸Eye Clinic, Department of Medical Science, Neuroscience and Sense Organs, University of Bari, Bari, Italy
• ⁹Azienda Ospedaliera Policlinico Tor Vergata, Roma, Rome, Italy

Introduction: Despite growing evidence that underscores the importance of the caregiver's role in the rehabilitation process, visual rehabilitation (VR) programs often overlook these needs. The aim of this pilot study is to investigate the caregiving burden (CB) among informal caregivers of visually impaired (VI) patients who attend Italian VR centers, setting the bases for large-scale research.Methods: Four Italian VR centers were involved. Demographic data and IADL (Instrumental Activities of Daily Living Scale) questionnaire to assess the degree of autonomy of VI patients were collected. Regarding the caregiver, the Italian validated version of the “Caregiver Burden Inventory (CBI)” was administered.Results: Fifty patients and their caregivers were included. The mean total CBI score was 23.6 points (SD 18.4), which is about the threshold for abnormal stress score. Moreover, 9 (18%) caregivers had scores ≥39, suggesting burn-out or mental disorder. The time-dependent (rho=0.88), developmental (rho=0.93), and physical burden (rho=0.87) domains demonstrated the strongest correlations with overall CBI score. Furthermore, each additional hour of caring increased the score by 1.07 points (p=0.004). No association was detected between total CBI score and other patient’s characteristics, including dual sensory deficit (auditory and visual), as well as patient’s IADL score.Conclusions: In this pilot study in VI patients attending VR services, about one half of caregivers of VI patients experienced stress, with 1 in 5-6 suffering from burn-out or mental health issues. Larger studies should assess both the outcome and the resources needed to screen for CB, with care integrated in the patient rehabilitation pathway.