Hollman Facilitations: A user-friendly tool of supporting children with visual impairment and their families in daily life.

The Robert Hollman Foundation (RHF) designed "Hollman Facilitations" (HF), a user-friendly way of supporting children with visual impairment (VI) and their families on a daily basis. This tool consists of specifically designed pictures on simple A4 sheets, which highlight with images and captions the key aspects of these children's everyday lives. Professionals can easily modify Hollman Facilitations to customize them to the unique developmental needs of every single child with VI and to their individualized strengths and weaknesses. This type of support acts as a reminder, to help families keep in mind what is essential for their children with VI in everyday life. HF are also useful for professionals because they give a clear, at-a-glance overview of the needs of visually impaired children, helping their communication with their families. In order to understand the perceived effectiveness of this tool, a questionnaire was designed and sent to 49 families, asking their opinions and satisfaction levels regarding its clarity, adequacy, usability and usefulness. 36 parents answered reporting overall very high satisfaction levels. A second questionnaire was sent to 29 RHF professionals to collect their opinions regarding HF usability and usefulness and the majority of them was very satisfied of its use in their daily work. This data supports overall this tool, which can be also easily replicated and also potentially used in other settings, beyond the field of visual impairment. •HF support children with VI and their families substantially and works as a reminder of what the professionals found in their consultations, to be fundamental for the children to promote the use of their functional vision and their strengths and to consequently improve the quality of their daily lives•HF favour a better communication between health professionals and families of children with VI, sharing therapeutic indications through the adoption of a customized, user-friendly, everyday tool by integrating pictures and text with oral communication•HF help professionals to identify strategies that best promote the overall development of children with visual impairment and to express them in an understandable way.

Parental Satisfaction with the Quality of Care in an Early Intervention Service for Children with Visual Impairment: A Retrospective Longitudinal Study.

The fundamental role of vision during development and the nurturing role of early intersubjectivity have enabled the Robert Hollman Foundation to develop an early intervention program providing holistic support to visually impaired children and their families, where fostering parent-infant interactions is at the heart of our care. The aim of this study is to understand how parents perceive this approach. It is an eleven-year retrospective study of children following the Robert Hollman Foundation's early intervention program, in which parents' (n = 1086) perceptions of quality of care were measured through the administration of a specifically designed 4-point scale questionnaire. Annual longitudinal trends of parents' perceptions were calculated for every single response. Parents reported a very high satisfaction value in 21/23 questions (Mean > 3.7 out of a maximum score of 4, with the highest scores in human and soft skills of professionals) with a statistically positive trend (p < 0.05), throughout the period considered. Our core approach, based on an individualized nurturing relational support, has been appreciated and confirmed by the high satisfaction reported in the questionnaires by parents of children with visual impairment. We therefore hypothesize that parent-infant relationship-based and individualized approaches may help parents achieve better health, well-being, and quality of daily life for their children.

Quality of life, functioning and participation of children and adolescents with visual impairment: A scoping review.

BACKGROUND: Vision has a key role in children's neuromotor, cognitive and social development. Children with visual impairment attain developmental milestones at later stages and are at higher risk of developing psychological disorders and social withdrawn. AIMS: We performed a scoping review to summarize the mostly used instruments assessing the impact of visual impairment on quality of life, functioning and participation of children and adolescents. In addition, the main findings of the included studies are discussed. METHODS AND PROCEDURES: We searched for papers assessing quality of life, functioning and participation of children and adolescents with visual impairment from 0 to 18 years old conducted between 2000 and 2023. OUTCOMES AND RESULTS: In total, 69 studies met the inclusion criteria and were included in the review. Child self-report, caregivers-proxy and self-report questionnaires as well as interviews were used. The results showed that quality of life, functioning and participation are significantly reduced in children and adolescents with visual impairment, and that the impact depends on different factors (e.g., severity of the impairment, age). CONCLUSIONS AND IMPLICATIONS: Considering the significant impact of visual impairment on quality of life, functioning and participation on this population, it is fundamental to develop integrated and multi-dimensional assessment programs that evaluate the impact of visual impairment on those dimensions considering different contexts of life (e.g., family, school, leisure time). WHAT THIS PAPER ADDS?: The present review aims to give an overview of what is known about the impact of visual impairment on quality of life, functioning and participation of children and adolescents. We assumed a biopsychosocial perspective which, in line with the definition of health by the International Classification of Functioning, Disability and Health (WHO, 2001), considered how body functions and structures, functioning, participation and environmental factors dynamically interact to define the health, or the disease, status of a person at a certain moment of life. We reported the most used instruments for the assessment of quality of life, participation, and functioning, with a specific interest on Patient-Reported Outcome Measures and self-report measures. By reporting the different instruments used, we gave a broad overview about the available tools that can be used in clinical as well as in research field to assess quality of life, functioning and participation in this population. Additionally, the review of the existing literature allowed us to demonstrate that those dimensions are negatively impacted by visual impairment and thus they should be considered in the assessment programs. Specifically, there is the need to provide more integrated assessment programs that investigate the impact of visual impairment on children and adolescents' social and emotional wellbeing, everyday functioning and social relationship, considering their subjective experience together with the one of caregivers, teachers, health care professionals, and other relevant adults involved in their life. Additionally, it is essential to plan and implement multidimensional assessment programs that consider how all areas of life are differently impacted by visual impairment.

Distance support and online intervention to blind and visually impaired children during the pandemic COVID-19.

The COVID-19 pandemic imposed dramatic changes to everyone's daily routines, but especially to children with developmental disabilities. The Robert Hollman Foundation decided not to interrupt its service to all the visually impaired children and initiated a Distance Support Project. It was an online process covering all aspects of support for the children and involving audio-video calls, videos and tailored-made multisensory material created specifically for each child. A questionnaire, carried out after the 5-month project duration, was created to collect feedback from parents and professionals to understand the impact this project had on everyone involved. Overall both parents and professionals indicated high levels of satisfaction, but in a significant number of questions parents reported consistently higher levels of satisfaction (p-value <0.001). It was shown that parents felt reassured at this otherwise very difficult time because their children were able to continue their treatment, even if in a very different way. This fact encourages us to consider enriching our existing programmes of support and care, integrating this online approach when necessary. At the same time, it seems clear that the responses of the professionals indicate their belief that the benefits of the traditional ways of working remain of unquestionable importance for children with sight deprivation.

Early onset retinal dystrophies: clinical clues to diagnosis for pediatricians.

INTRODUCTION: Inherited retinal dystrophies are major cause of severe progressive vision loss in children. Early recognition and diagnosis are essential for timely visual rehabilitation during the appropriate stages of the visual development, as well as for genetic diagnosis and possible gene therapy. The aim of this study is to characterize a pattern of the initial visual symptoms, which could help the pediatricians and the primary care providers to suspect an inherited retinal disorder in its early stage. METHODS: We analyzed the initial clinical symptoms, based on parental report during the first visit to specialist, in 50 children diagnosed with retinal dystrophy confirmed by full-field electroretinography. The analysis included the age of symptoms onset and the type of visual symptoms, both in the total population and in the following diagnostic subgroups: rod-cone dystrophy (n.17), cone-rod dystrophy (n.12), achromatopsia (n.13), congenital stationary night blindness (n.6) and Leber's congenital amaurosis (n.2). RESULTS: The majority of children (80%) had the onset of clinical symptoms before one year of age. The most frequent visual complaints reported by parents were nystagmus (76%), visual loss (28%) and photophobia (8%). Nystagmus was the first symptom reported by parents if the disease onset was before the age of six months, while the onset after the six months of age was more likely associated with the complain of vision loss. CONCLUSIONS: Low vision and nystagmus observed by parents, particularly in the first year of life, may represent a red flag, prompting an appropriate ophthalmological workup for inherited retinal dystrophy.