Comprehending the impact of low vision on the live

Authors: Linda Rainey Ellen Bernadette Maria Elsman Ruth Marie Antoinette van Nispen Lisette Michelle van Leeuwen Gerardus Hermanus Maria Bartholomeus van Rens

Publish Date: 2016/04/13

Volume: 25, Issue: 10, Pages: 2633-2643

PDF Link

Abstract

Three stakeholders were involved in the developmental process of the conceptual model children and adolescents with a visual impairment n = 40 parents of children with a visual impairment n = 25 and professionals of multidisciplinary rehabilitation centres and specialised schools n = 25 Qualitative methods including focus groups online and facetoface brainstorming sessions and concept mapping were used to investigate the impact of visual impairment on the lives of children and adolescents and to create the conceptual model To aid interpretation of the large age range four agebands were formedFor each ageband 0–2 3–6 7–12 and 13–17 years a total of 153 200 297 and 306 statements were generated by all stakeholders respectively The conceptual models show that low vision affects the sensorial development as well as the physical psychological and social wellbeing of children and adolescents In addition identified external factors ie education/employment and parental influence can either facilitate or hinder participationThe developed model shows which life aspects of children are affected by low vision The needs identified by children and adolescents correspond not entirely to the perspective of parents and low vision professionals Future research should focus on developing and validating a new questionnaire based on the conceptual model This will aid goal setting rehabilitation referral and the accomplishment of developmental milestones and life transitions of children and adolescents with a visual impairment ultimately improving their participation and quality of lifeLow vision is estimated to affect around 2600 children aged 0–14 years in the Netherlands total population approximately 17 million 1 The main causes of low vision among Western children are developmental and genetic disorders 2 Good visual skills are required in child development when acquiring cognitive and functional skills 3 In addition low vision is associated with a delay in motor development and poorer mathematical social and immediate problemsolving skills 4 5 6 7 Khadka et al 8 showed that although children and adolescents with a visual impairment have lifestyles similar to that of their sighted peers they experience participation restrictions in the areas of leisure time and sports and restrictions with respect to social interaction Moreover starting and sustaining social and romantic relationships and interactive play is hindered by low vision in children and adolescents 9 10 11 12 Rehabilitation services can facilitate improvements in functional status participation in activities and quality of life however little is known about participation goals in children and adolescents with low vision 13Throughout the developmental process children experience rapid and significant transitions eg acquiring new skills and knowledge educational transitions and physiological changes Therefore the planning of rehabilitation services for children should be set within a longterm perspective and should provide support to children and their families discussing the affected life areas and participation restrictions prior to and during rehabilitation 14 Although the capacity of low vision to impact the lives of children and adolescents and the importance of rehabilitation is well recognised a structural and systematic understanding of which participation domains are affected in children and adolescents is lacking This can negatively affect the first step of rehabilitation setting participation goals during an intake procedure Multidisciplinary Rehabilitation Centres MRCs are currently dependent on their own knowledge and clinical expertise when creating an inventory of a child’s or adolescent’s participation goals Relying solely on the personal expertise of low vision professionals eg social workers occupational therapists educational and developmental psychologists carries a risk of bias and an underrepresentation of needs 15The International Classification of Functioning Disability and Health for Children and Youth ICFCY offers a conceptual framework to identify problems in infancy childhood and adolescence 16 The ICFCY aims to identify problems in body structure and function activity limitations participation restrictions and environmental factors of importance to children and youth 16 A patientrecord study evaluating participation goals of visually impaired children and adolescents aged 0–18 years obtained during the intake procedure showed that most goals could be linked to the structure of ICFCY supporting its suitability as a general framework for assessing life areas affected by low vision in children and adolescents 17 However goals related to psychological functioning eg coping with or adapting to the impairment could not be linked to its content In addition several of the important life areas identified by the ICFCY eg social interaction communication and leisure activities were often not represented in the participation goals of visually impaired children and adolescents 17 Although this could indicate that low vision does not affect these life areas this is counterintuitive and not supported by the literature Moreover incomplete inventories of participation goals can affect referral to low vision treatment programmes and the quality of care provided 18 In addition to the general framework of the ICFCY it is necessary to develop a comprehensive conceptual model detailing the aspects of a child’s life and participation restrictions affected by low vision at different stages 0–17 years This will aid the rehabilitation process and ultimately improve the participation prospects of children and adolescents with a visual disability and their quality of life The present study details the development of a conceptual model of the life areas affected by low vision in children and adolescents 0–17 years involving children and adolescents with a visual impairment parents and low vision professionals This paper focuses on visually impaired children and adolescents’ participation in activities and participation needs and restrictions experienced by them To facilitate interpretation four agebands were formed based on WHO criteria ≤2 3–6 7–12 and 13–17 years The study protocol was approved by the Medical Ethical Committee of the VU University Medical Centre Amsterdam the Netherlands This study has been performed in accordance with the ethical standards as laid down in the Declaration of Helsinki Informed consent was obtained from all individual participants included in the study

Keywords: