Congenital anomalies: parents' concerns and opinions towards public health policies and improved effectiveness of health services

Santos, Ana João; Braz, Paula; Machado, Ausenda; Dias, Carlos Matias

http://hdl.handle.net/10400.18/5645

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BACKGROUND: The changes deriving from the birth of a child with a Congenital anomaly (CA) or Cerebral Palsy (CP) implies not only new emotional demands resulting from the child's condition, but in many cases an increase of interactions with health services and professionals. Health services and health policies must acknowledge and offer the opportunity for the family to define its own problems. METHODS: The cross-sectional descriptive qualitative study was conducted with a convenience sample of parents of children diagnosed with four groups of CA (severe heart anomalies; spina bifida; orofacial clefts and Down syndrome) and/or CP. A semi-structured online questionnaire to be answered by parents was sent by web link to focal points of five parents associations and professional institutions in Portugal. Data was analysed through thematic content analysis (open-ended questions) and descriptive analysis (closed-ended questions). RESULTS: Families feel professionals should recognise the importance of obtaining more complete and accurate information about the child's diagnosis. Health services were perceived as displaced and unordered, since parents indicate a lack of multidisciplinary interventions and lack of coordination or communication between professionals. Nonetheless, parents felt overall confident on the health care provided and on the “training” they get to care for their children deriving from the interactions with health professionals. CONCLUSION: Health policies should ensure that families and children with CA and/or CP have access to reliable information. Health services and professionals should take into account the unique needs of each family and child and develop integrated interventions.