Erfahrungen von Menschen mit altersbedingter Makuladegeneration im täglichen Leben und mit der Gesundheitsversorgung in Deutschland

Purpose. Health care for people with age-related macular degeneration (AMD) and visual impairment/blindness is complicated as it includes both medical care and low vision care offered by various providers without established coordination. This qualitative analysis aims at exploring experiences of people with AMD in daily life and with their health care including their information and help needs. Material and Methods. This analysis is part of the qualitative arm of a wider mixed methods research project. As a sampling strategy, we pursued the goal of maximum variation. We conducted narrative, semi-structured interviews with people diagnosed with AMD all over Germany. The interviews were thematically analysed. Results. Twenty-nine interview partners were included in this analysis. Experiencing AMD in everyday life meant (i) the perception of visual changes, (ii) dealing with blindness per- ceived as stigma, and (iii) social consequences. Their health care experiences were shaped by their individual information needs, questioning their communication with their ophthal- mologists, increased time required for medical examinations and a great logistical effort in order to access both medical as well as low vision care. Support services in the framework of low vison care were well appreciated by our interviewees. Conclusion. People with AMD have individual information and help needs that must to be addressed and acknowledged in health care. Keywords age-related macular degeneration, patients’ experiences, low vision care, qualitative research, information needs