Development of a strategy of physician-patient relationship for improving care for patients with disorders of sex development
a qualitative study
Keywords:
Disorders of sex development, Adrenal hyperplasia, congenital, Education, medical, Physician-patient relation, Interdisciplinary communicationAbstract
CONTEXT AND OBJECTIVE: Care for patients with disorders of sex development (DSD) should be provided in integrated-care centers by a multidisciplinary team. Implementation of this project within the teaching clinic routine presents several challenges: 1) difficulties in relationships between the medical team and patients and their families; 2) age, ethnic and cultural differences; 3) DSD-related prejudice; and 4) physicians’ anxiety. We report on a psychologist’s work strategy that focused on creating arrangements that could contribute towards development of the relationship between the medical team and patients and their families, as a way of preparing the clinical staff to manage treatment of adult DSD patients. DESIGN AND SETTING: Prospective qualitative study. METHODS: Between February 2010 and April 2015, we conducted a qualitative study in the Adrenal Outpatient Clinic of Escola Paulista de Medicina (São Paulo, Brazil), based on interviews, team discussions and group dynamics with resident physicians, postgraduate students and attending physicians. RESULTS: Implementation of the project allowed residents to build a story of differentiated care for their patients, thus facilitating dialog between them and making it possible to address taboo topics. Sequential care provided by the same resident led patients to feel that their doctor cared for them, with individuality, continuity and a sense of interest in their story. CONCLUSION: Presence of a psychologist in the outpatient routine enabled inclusion of subjective factors in the routine of medical consultations, thus broadening the notion of healthcare for patients with DSD, facilitating bonds and providing support for difficulties faced.
Downloads
References
Lee PA, Houk CP, Ahmed SF, et al. Consensus statement on management of intersex disorders. International Consensus Conference on Intersex. Pediatrics. 2006;118(2):e488-500.
Brauer S. On the management of differences of sex development. Ethical issues relating to "intersexuality". Available from: https://www.google.com.br/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&ved=0CCoQFjABahUKEwi38O36wtHIAhVCjpAKHfmVAeg&url=http%3A%2F%2Fwww.aph.gov.au%2FDocumentStore.ashx%3Fid%3D8aae774b-1b64-4ae1-947f-8ee2724ae21a&usg=AFQjCNG-r4QfG-ly2UZ9cN8SGXOBOLP-Dw&cad=rja Accessed in 2015 (Oct 20).
Hiort O, Birnbaum W, Marshall L, et al. Management of disorders of sex development. Nat Rev Endocrinol. 2014;10(9):520-9.
Telles-Silveira M, Knobloch F, Kater CE. Management framework paradigms for disorders of sex development. Arch Endocrinol Metab. 2015;59(5):383-90.
Spinola-Castro AM. A importância dos aspectos éticos e psicológicos na abordagem do intersexo [Importance of the ethical and psychological features in the intersex management]. Arq Bras Endocrinol Metab. 2005;49(1):46-59.
Spinola-Castro AM. Aspectos históricos e éticos dos distúrbios da diferenciação do sexo. In: Maciel-Guerra AT, Guerra Junior G, editores. Menino ou menina? Os distúrbios da diferenciação do sexo. 2a ed. Rio de Janeiro: Rubio; 2010. p. 455-78.
Caprara A, Franco ALS. A relação paciente-médico: para uma humanização da prática médica [The patient-physician relationship: towards humanization of medical practice]. Cad Saúde Pública. 1999;15(3):647-54.
Kogan BA, Gardner M, Alpern AN, et al. Challenges of disorders of sex development: diverse perceptions across stakeholders. Horm Res Paediatr. 2012;78(1):40-6.
Fagnani Neto R, Obara CS, Macedo PC, Cítero VA, Nogueira-Martins LA. Clinical and demographic profile of users of a mental health system for medical residents and other health professionals undergoing training at the Universidade Federal de São Paulo. Sao Paulo Med J. 2004;122(4):152-7.
Pope C, Ziebland S, Mays N. Qualitative research in health care. Analyzing qualitative data. BMJ. 2000;320(7227):114-6.
Barbier R. A pesquisa-ação. Brasília: Plano Editora; 2002.
Thiollent M. Metodologia da pesquisa-ação. 2a ed. São Paulo: Cortez; 1987.
Patton MQ. Qualitative evaluation and research methods. Newbury Park: Sage; 1990.
Milles MB, Huberman AM. Qualitative data analysis. Thousand Oaks: Sage; 1994.
Mays N, Pope C. Rigour and qualitative research. BMJ. 1995;311(6997):109-12.
Pope C, Mays N. Reaching the parts other methods cannot reach: an introduction to qualitative methods in health and health services research. BMJ. 1995;311(6996):42-5.
Freud S. As perspectivas futuras da terapia psicanalítica. In: Edição standard brasileira das obras psicológicas completas de Sigmund Freud. Rio de Janeiro: Imago. 1969. p. 125-36.
Balint M. O médico, seu paciente e a doença. Rio de Janeiro: Atheneu; 1975.
Campos GWS. Equipes de referência e apoio especializado matricial: um ensaio sobre a reorganização do trabalho em saúde [Local reference teams and specialized matrix support: an essay about reorganizing work in health services]. Ciênc Saúde Coletiva. 1999;4(2):393-403.
Adam P, Herzlich C. Sociologia da doença e da medicina. Bauru: EDUSC; 2001.
Gadamer HG. O caráter oculto da saúde. 2a ed. Petrópolis: Vozes. 2011.
Charon R. At the membranes of care: stories in narrative medicine. Acad Med. 2012;87(3):342-7.
Charon R. Narrative medicine in the international education of physicians. Presse Med. 2013;42(1):3-5.