Abstract

BackgroundPregnancy-related care can reduce the risk of adverse pregnancy outcomes in women with type 1 diabetes. But little is known about the special health-care needs related to pregnancy of these women, or about the gap between these needs and health-care provision in China. We aimed to identify the perceived needs in women with type 1 diabetes and health-care providers for pregnancy-related care. The goal is for the findings to assist in the establishment of optimised management of this population in China. MethodsWe did in-depth interviews, a method widely used in social science to investigate people's attitudes and behaviours. The intended interviewees included women with type 1 diabetes (aged ≥18 years) and health-care providers of both diabetes-related and pregnancy-related disciplines living in Guangdong, China. Written informed consent was obtained from all participants. Selective sampling was used to ensure that the recruited women with type 1 diabetes covering different areas of Guangdong, and were of diverse age, disease duration, marital and child-bearing status, income, and education level; and to ensure that the included health-care providers were from different types of health-care facilities. Transcripts of the interviews were coded into themes by three investigators (SX, SL, and CW) via a thematic framework method and NVIVO (version 10) qualitative software. The recruitment ended when no new themes emerged. Rendered themes of women with type 1 diabetes and health-care providers were compared by thorough discussion within the study team. FindingsThe recruitment started in April, 2015, and ended in June, 2016. 30 women with type 1 diabetes (mean age 26·9, SD 5·7 years) and 35 health-care providers (17 physicians and 18 nurses; 24 from general hospitals and 11 from community health facilities) were included in the study. Pregnant women and health-care providers agreed that pregnancy-related health-care resources were scarce and knowledge of pregnancy-related health care needs of both patients and health-care providers was limited. Both groups agreed that pregnancy-related health care in various forms should be started at the age of maturity (18 years old) and done by well-trained multidisciplinary health-care providers. Both groups acknowledged the importance of peer support in pregnancy-related health care. And both groups agreed on the need for guidelines for planned pregnancy and management of blood glucose and diabetic complications during pregnancy. However, health-care providers reported that bodyweight management, fetal development monitoring, type 1 diabetes-specific screening tests, and postnatal lifestyle should also be emphasised. Health-care providers had a generally positive attitude to outcomes of pregnancy if glycaemic control was satisfactory, whereas patients tended to have a pessimistic perspective. Finally, women with type 1 diabetes expressed great unmet needs: thorough and timely communication with health-care providers, psychological consultation, and type 1 diabetes knowledge in non-diabetician health-care providers. Most health-care providers did not show awareness of these needs, although they were aware of insufficient pregnancy-related knowledge and expressed their intent for further training. InterpretationWomen with type 1 diabetes had various unmet needs for pregnancy-related health care, but the health-care resources were scarce in Guangdong. Both patients and health-care providers had gaps in knowledge of the need for pregnancy-related health care, indicating that further education should be given to patients, and the role of professional and psychosocial support should be enhanced. These findings identify gaps between the needs of women with type 1 diabetes and current health care provision, and would be helpful to guide the establishment of a patient-centered pregnancy-related health care system in Guangdong. FundingNational Health and Family Planning Commission Foundation for public welfare industry research project (201502011), World Diabetes Foundation (WDF14-921), and Sun Yat-Sen University clinical research 5010 program (2007030).

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