Promoting psychological well-being in women with phenylketonuria: Pregnancy-related stresses, coping strategies and supports

Abstract

ObjectiveTo explore the pregnancy-related stresses anticipated and experienced by women with phenylketonuria (PKU) and the coping strategies and supports utilised or anticipated to be beneficial during pregnancy.MethodsThematic analysis of interview data from eight women with PKU in a cross-sectional, qualitative study. Five of the participants had never had a pregnancy but were planning to in the future, two participants had children, and one participant was pregnant.ResultsThe central concern regarding pregnancy was achieving and maintaining the essential low Phe levels, in the context of the devastating effects of high levels. The Transactional Model of Stress and Coping was utilised to understand the coping strategies and supports utilised or anticipated to be beneficial during pregnancy. Similarities and differences between the women who had experienced pregnancy, and those who were planning a pregnancy in the future were evident in key coping strategies, with knowledge seeking, positive reappraisal, and reassurance seeking reported. Support from health professionals and other mothers with PKU was key for all women. Psychological support was identified as a resource perceived to be beneficial to promote psychological well-being during pregnancy but not yet provided.ConclusionPregnancy is associated with significant stresses for women with PKU. Clinical implications of the findings include provision of psychological support.

The Role of Health-Promoting Behaviors in Predicting the Quality of Life of Pregnant Women

“…Analysis of collinearity index of the model show that tolerance index in all variables is less than 0.2 and index of covariance inflation is not also bigger (usually bigger than 10 as a criterion), therefore, collinearity between predictor variables is not tolerable. (18,19,20,21,22,23,24,25,26). According to the reports, the Organization of Health and Human Services of the United States, unhealthy behaviors and lifestyle are two important factors that cause 10 cases of mortality.…”

“…According to the results of the regression, interpersonal relationships among the health behaviors is only predictor of quality of life. (20,22,24,26,26). Pregnancy in women can increase their concerns about their health and the infants, the loss of freedom of action, the financial pressure, the responsibility for pregnancy and so on; moreover, during pregnancy and a few months after the baby's birth, less time is devoted to marital relationships.…”

“…Vinikoor-Imler et al (2011) in his study on pregnant women showed that there was a relationship between high level of physical unawareness and harmful consequences of pregnancy; they showed that high level of walking was inversely related to the pressures of pregnancy (23). Roberts et al (2014) conducted a study on the promotion of psychological well-being of women with PKU Fateel during pregnancy and considered psychological support as a key factor for improving psychological well-being during pregnancy (24) In a study on older women, Morovvati Sharifabad et al (2004) concluded that there was a relationship between HPBs and perceived religious support (25). In another study Baheiraet al (2011) showed that that there was a relationship between HPBs of women and social support (26).…”

Relationships Between Childhood Experiences and Adulthood Outcomes in Women with PKU: A Qualitative Analysis

“…This study, approved by the Human Research Ethics Committee of the Children, Youth, and Women's Health Service, forms part of a study to explore women's experiences of PKU in relation to pregnancy (Roberts et al 2014). As such, participants were all female.…”

“…(see Appendix for full list of interview questions). Participants' experiences of PKU across their lifetime were explored (reported here), followed by their perceptions and/or experiences of pregnancy (reported in Roberts et al 2014). Interviews were analyzed using thematic analysis (Braun and Clarke 2006).…”