Disease perception among mothers of children with PKU

Research made use of the participant-observation method, together with formal and informal interviews at Istanbul PKU Family Association, the Metabolic Clinic of Adana Balcalı Hospital in Turkey and Istanbul Çapa Hospital. Interviews were carried out with mothers of PKU patients in various cities. The research purpose was to highlight mothers' understanding of their children's condition in terms of disease perception, including observations from the formal and informal interviews. Research aim was to provide mothers' view towards the disease, explaining how they respond to their situation in order to fashion meaning. Beliefs and expectations tend to impact patients' and families' life qualities, together with their social and cultural statuses in terms of social roles and responsibilities in the society as active individuals and this at times creates a placebo effect. Harmony of mind, body and spirit is crucial. Meaning-making mechanisms, together with perception and its determinants, connections and relations between them are noted as the main determinants of disease perception. Difference between eastern and western region of Turkey has been noted when comparing determinants of disease perception: A difference in social habitus, structural differences in the medical systems -issues of structural violence, socio-economic levels, gender discrimination, diversity of patient cultural and ethnic background, the need to grasp patient needs and importance of right approach, mistrust in medicine, ability to acknowledge and respect patient and family subjectivities, human capital, income deficiencies- have been noted. Notions of food and culture, connections and relations between the two have been investigated and problematized within the framework of the research objective.