Abstract

SALVIANO, Isabel Cristina de Barros; CASTRO, Martha Moreira Cavalcante; MATOS, Marcos Antônio Almeida  and  AGUIAR, Carolina Villa Nova. Development of instrument in rare diseases: access to health and social support. Rev. Psicol. Saúde [online]. 2020, vol.12, n.3, pp. 03-18. ISSN 2177-093X.  http://dx.doi.org/10.20435/pssa.vi.1065.

INTRODUCTION: The chronic degenerative condition related to Rare Diseases (DR) is permeated by complex social processes and access to health, whose understanding requires evaluation from the perspective of affected patients. OBJECTIVE: To build up an instrument that allows those affected by these pathologies to evaluate their perception regarding access to healthcare and social support. METHODS: Study on the development of an instrument based on the model proposed by Luiz Pasquali. RESULTS: After a factorial analysis, the final result that showed preliminary evidence of validation was an instrument with four domains: Health Resources, Financial Resources, Social Aspects, and Individual Aspects, with 10 items. FINAL CONSIDERATIONS: The final instrument developed gathered evidence of validity, revealing item quality in representing the concepts underlying each domain. Through its psychometric properties, the instrument showed that it has representativeness regarding the perception of the affected by DR regarding their access to health and social support..

Keywords : rare diseases; social support; health services accessibility; validation studies.

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