O cuidado à saúde de pessoas com albinismo: uma dimensão da produção da vida na diferença

• Published in: Physis (Rio de Janeiro, Brazil) Vol. 27; no. 2; p. 319
• Main Authors: Nereida Lúcia Palko dos Santos, Renata Meneses Magalhães Pereira, Marlea Chagas Moreira, Ana Lúcia Abrahão da Silva
• Format: Journal Article
• Language: Portuguese
• Published: Rio de Janeiro Universidade do Estado do Rio de Janeiro, Instituto de Medicina Social 01.06.2017
• Subjects: Access; Albinism; Data collection; Families & family life; Forces and relations of production; Health care; Health care delivery; Health care policy; Health education; Health services utilization; Information; Intersectionality; Mothers; People with disabilities; Physical disabilities; Social security
• ISSN: 0103-7331; 1809-4481
• DOI: 10.1590/s0103-73312017000200008

The healthcare of people with albinism goes beyond the social invisibility of this population group, access to information and health services, comprehensive care and multiplicity in life production. The aim is to discuss the health care of people with albinism and their family. Descriptive study with a qualitative approach was developed at Benjamin Constant Institute (IBC). Data collection took place between April and May of 2012, using semi-structured individual interviews with ten participants, people with albinism / family, as follows: two students of IBC, six mothers, a grandmother and a user of the ophthalmology service. Highlighting the intersectionality, health related education and social security. There is a lack of formulation and execution of social policies, regulatory requirements, as the possibility of overcoming social invisibility and ensuring the right to health. The lives of people with albinism goes beyond disability and difference and demand the fulfillment of regulatory requirements, unique and subjective processes for the production of care in daily health practices. More than data knowledge, they require listening, horizontal relations and co-production for health care.