Comprehending the impact of low vision on the lives of children and adolescents: a qualitative approach

Abstract

Purpose To develop a comprehensive, conceptual model detailing the aspects of a child's life (\18 years) that are affected by low vision. Methods 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 face-to-face 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 age-bands were formed.Results For each age-band (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 well-being of children and adolescents. In addition, identified external factors (i.e. education/employment and parental influence) can either facilitate or hinder participation. Conclusions The 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 life.

Psychometric evaluation of a new proxy‐instrument to assess participation in children aged 3–6 years with visual impairment: PAI‐CY 3‐6

“…Unlike the PAI‐CY 3‐6, the CVFQ measures vision‐related quality of life and has not been developed involving the target‐population or end‐users . The PAI‐CY 3‐6 has strong and unique content validity, because it was firmly grounded in a population of children aged 3–6 years with VI, whose parents and rehabilitation professionals have shaped its content . Care was taken to ensure that content validity was retained in the process of item deletion, amongst others by checking whether the rehabilitation needs parents expressed after each domain could still be identified by the remaining items.…”

“…The preliminary version of the PAI‐CY 3‐6 comprises 52 items grouped into 12 domains (for descriptive purposes only, in order to provide contextual meaning) that were informed by the concept‐mapping workshops with end‐users: attachment (AT‐5 items), incentive processing (IP‐4 items), visual attention (VA‐4 items), orientation (OR‐3 items), mobility (MO‐6 items), play (PL‐3 items), social relationships (SR‐6 items), motor functioning (MF‐2 items), communication (CO‐4 items), school/daycare (SD‐6 items), reading and writing (RW‐5 items), and self‐reliance (SE‐4 items). Each item is scored on a 4‐point Likert scale with response options: not difficult (1), slightly difficult (2), very difficult (3), and impossible (4).…”

“…Although the prevalence of childhood visual impairment (VI) is low, it has lifelong and profound implications for both the child and its family, influencing development, education, and physical, social and psychological well‐being . As a result, the needs of children with VI and their parents should be assessed from a life‐time perspective.…”

“…The Participation and Activity Inventory for Children and Youth (PAI‐CY) has recently been developed in the Netherlands, to assess the participation needs of children with VI and their parents . Since needs change with increasing age and development, four age‐appropriate versions of the PAI‐CY were created, according to the age‐categories of the World Health Organization (WHO): 0–2, 3–6, 7–12 and 13–17 years.…”

“…The content of the PAI‐CY was driven by the most important stakeholders (i.e. parents of children with VI, children with VI aged 7–17 years and professionals working at low vision rehabilitation centers) using online questionnaires and concept‐mapping workshops, strengthening its content validity. Feasibility and acceptability of the PAI‐CY were tested in a pilot study .…”