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

ABSTRACT: To develop a comprehensive, conceptual model detailing the aspects of a child's life (<18 years) that are affected by low vision.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.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.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.

SUBMITTER: Rainey L

PROVIDER: S-EPMC5010827 | biostudies-literature | 2016 Oct

REPOSITORIES: biostudies-literature

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

Rainey Linda L Elsman Ellen Bernadette Maria EBM van Nispen Ruth Marie Antoinette RMA van Leeuwen Lisette Michelle LM van Rens Gerardus Hermanus Maria Bartholomeus GHMB

Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation 20160413 10

<h4>Purpose</h4>To develop a comprehensive, conceptual model detailing the aspects of a child's life (<18 years) that are affected by low vision.<h4>Methods</h4>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 ...[more]

PMID: 27076189

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Project description:ObjectivesTo generate a conceptual framework describing what is done to reduce the impact of chronic tinnitus on the lives of children and adolescents.DesignViews and experiences of 32 adults from two participant groups informed this concept mapping study: (i) a tinnitus group (adults who experienced tinnitus during childhood/adolescence, and primary carers of children/adolescents with tinnitus) and (ii) a clinicians' group (clinicians who provided care for children/adolescents with tinnitus). Participants produced statements describing what is done to reduce the impact of chronic tinnitus on the lives of children and adolescents who experience it. Through grouping and rating processes, they identified key concepts and inferred their associated benefit.ResultsThe participants generated 102 unique statements across four concepts: (1) Education, Support, and Counselling; (2) Support from Parents and Teachers; (3) Clinical Assessments and Management; and (4) Self-Management Techniques. Many statements highlighted the need for child-friendly and patient-centred care. Adults with personal experience of childhood tinnitus tended to perceive many of the statements as more beneficial than did the clinician group.ConclusionsAlthough many children will develop management strategies to assist them with their tinnitus, both the adults who experienced tinnitus as children and their parents valued strategies involving clinical care, knowledge, and expertise. Participants from the tinnitus group perceived a greater degree of benefit associated with strategies from all four clusters than the clinicians' group. However, both groups perceived the greatest degree of benefit as being associated with activities and strategies within the Education, Support, and Counselling and the Clinical Assessments and Management clusters. Both groups identified that recognising the occurrence of tinnitus for children and adolescents, acknowledging the potential for associated distress, and initiating clinical care provide the nexus of effective management. Addressing the concerns and needs of parents was also perceived as valuable; hence, approaching the management of tinnitus during childhood and adolescence from a family-centred care framework is recommended.

Project description:BackgroundIn 2013, the World Health Organization (WHO) launched the Rapid Access Expansion (RAcE) programme in the Democratic Republic of Congo, Malawi, Mozambique, Niger, and Nigeria to increase coverage of diagnostic, treatment, and referral services for malaria, pneumonia, and diarrhea among children ages 2-59 months. In 2017, a final evaluation of the six RAcE sites was conducted to determine whether the programme goal was reached. A key evaluation objective was to estimate the reduction in childhood mortality and the number of under-five lives saved over the project period in the RAcE project areas.MethodsThe Lives Saved Tool (LiST) was used to estimate reductions in all-cause child mortality due to changes in coverage of treatment for the integrated community case management (iCCM) illnesses - malaria, pneumonia, and diarrhea - while accounting for other changes in maternal and child health interventions in each RAcE project area. Data from RAcE baseline and endline household surveys, Demographic and Health Surveys, and routine health service data were used in each LiST model. The models yielded estimated change in under-five mortality rates, and estimated number of lives saved per year by malaria, pneumonia and diarrhea treatment. We adjusted the results to estimate the number of lives saved by community health worker (CHW)-provided treatment.ResultsThe LiST model accounts for coverage changes in iCCM intervention coverage and other health trends in each project area to estimate mortality reduction and child lives saved. Under five mortality declined in all six RAcE sites, with an average decline of 10 percent. An estimated 6200 under-five lives were saved by malaria, pneumonia, and diarrhea treatment in the DRC, Malawi, Niger, and Nigeria, of which approximately 4940 (75 percent) were saved by treatment provided by CHWs. This total excludes Mozambique, where there were no estimated under-five lives saved likely due to widespread stockouts of key medications. In all other project areas, lives saved by CHW-provided treatment contributed substantially to the estimated decline in under-five mortality.ConclusionsOur results suggest that iCCM is a strategy that can save lives and measurably decrease child mortality in settings where access to health facility services is low and adequate resources for iCCM implementation are provided for CHW services.

Dataset Information

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

Publications

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

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