Parenting Science Gang : radical co-creation of research projects led by parents of young children

Background Parents are increasingly searching online for information supported by research but can find it difficult to identify results relevant to their own experiences. More troublingly, a number of studies indicate that parenting information found online often can be misleading or wrong. The goal of the Parenting Science Gang (PSG) project was to use the power of the Internet to help parents ask questions they wanted to have answered by scientific research and to feel confident in assessing research evidence. Methods By using Facebook to recruit groups and facilitate interactions, PSG was able to engage fully the target public of parents of young children in the radical co-production of scientific studies, while not creating an undue burden on time or restricting participants due to disability, financial status or location. By giving parents true partnership and control of creation of projects, PSG ensured that the chosen questions were ones that were of most relevance and interest to them. Results This paper presents a summary of eight projects, with three in more detail, designed and implemented by PSG Facebook groups in collaboration with experts. Most projects had health related themes, often prompted by dissatisfaction with treatment of parents by health professionals or by feelings of being marginalised by pregnancy and motherhood, as well as by the lack of evidence for their questions and concerns. The PSG approach meant that these frustrations were channelled into actions. All eight of the PSG groups engaged in meaningful interactions with experts and co-produced studies with the groups defining the questions of interest. Conclusions This radically user-led design meant that the PSG staff and the collaborating experts had to live with a high degree of uncertainty. Nevertheless, PSG achieved its goal of academically productive, truly co-produced projects, but as important were the positive effects it had on many of the participants, both parents and experts. At the point of writing this paper, PSG projects have led to outputs including at least eight papers published, in press or in preparation, seven conference presentations, testimony to the Infant Feeding All-Party Parliamentary Group, and with more to come

Mutations in NYX, encoding the leucine-rich proteoglycan nyctalopin, cause X-linked complete congenital stationary night blindness

During development, visual photoreceptors, bipolar cells and other neurons establish connections within the retina enabling the eye to process visual images over approximately 7 log units of illumination. Within the retina, cells that respond to light increment and light decrement are separated into ON- and OFF-pathways. Hereditary diseases are known to disturb these retinal pathways, causing either progressive degeneration or stationary deficits. Congenital stationary night blindness (CSNB) is a group of stable retinal disorders that are characterized by abnormal night vision. Genetic subtypes of CSNB have been defined and different disease actions have been postulated. The molecular bases have been elucidated in several subtypes, providing a better understanding of the disease mechanisms and developmental retinal neurobiology. Here we have studied 22 families with 'complete' X-linked CSNB (CSNB1; MIM 310500; ref. 4) in which affected males have night blindness, some photopic vision loss and a defect of the ON-pathway. We have found 14 different mutations, including 1 founder mutation in 7 families from the United States, in a novel candidate gene, NYX. NYX, which encodes a glycosylphosphatidyl (GPI)-anchored protein called nyctalopin, is a new and unique member of the small leucine-rich proteoglycan (SLRP) family. The role of other SLRP proteins suggests that mutant nyctalopin disrupts developing retinal interconnections involving the ON-bipolar cells, leading to the visual losses seen in patients with complete CSN

The evaluation of tailored and web-based information for new fathers

Background: Information and advice on infant health and development have been shown to be well received by new parents and to lead to more confident and nurturing parenting. However, in spite of the accumulating evidence highlighting the importance of fathers to the well-being of their families, fathers rarely access and utilize 'parenting' information. Tailored information for fathers delivered via email and Internet may provide an alternate route for support for fathers. This study aimed to assess father's readiness to utilize electronic information tailored to father's role. Methods: Two hundred and fifty-three fathers from antenatal classes in two Australian cities were offered email and web-based information on seven topics: baby play, breastfeeding, post-natal depression, father-infant bonding, sex after birth, work-family balance and fussy babies. Of 137 who completed consent forms, a total of 105 fathers selected three topics and 67 fathers provided 149 topic evaluations. Results: Most respondents were from managerial, professional or skilled occupations and had higher educational qualifications than the general population of fathers. The most popular topics were those that related to father-infant interaction (baby games and father-infant bonding), and the least popular were breastfeeding and sex after the birth. Respondents rated the information as satisfactory and most (78%) indicated that it changed their approach to fathering. Although the websites provided were available through the Internet, few fathers had previously accessed them. Conclusions: Information tailored to new father's perspectives provided through email or Internet may increase new fathers' access to useful knowledge and support. Important health topics such as breastfeeding may not currently be perceived as particularly relevant to fathers in the antenatal period. Portals designed to filter existing websites could facilitate the use of parenting information by new fathers

A qualitative exploration of the Couvade syndrome in expectant fathers

The aim of this qualitative study is to explore the nature and duration of male partners somatic and psychological symptoms, across gestation and parturition, collectively called the Couvade syndrome. Fourteen men with expectant partners aged 19-48 years from diverse social and ethnic backgrounds were interviewed. The data was processed using qualitative analytical software WinMAX Professional and the emerging themes and sub-categories identified and analysed. The first was “Emotional Diversity in Response to Pregnancy”, that varied with time and other factors and also included mixed and polarised feelings such as excitement, pride, elation, worries, fears, shock and reluctance. The second was “Nature, Management and Duration of Symptoms”, which revealed the types and duration of physical and psychological symptoms experienced by men. Attempts at managing these were influenced by social and cultural factors. Physical symptoms were more common than psychological ones, and their time course demonstrated trends similar to those reported for the Couvade syndrome. Although the former were reported to their GPs, no definitive diagnosis was made despite medical investigations being performed. The third theme, “Explanatory Attempts for Symptoms” was influenced by cultural beliefs and conventions like religion, alternative medical beliefs or through the enlightenment by health care professionals in the process. Some participants were unable to find explanations for symptoms but some perceived that they were related in some way to the altered physiology of their female partners during pregnancy. These findings highlight the need for further research to acquire deeper insight into men’s experiences of, and responses to, pregnancy as a way of explaining the syndrome

Couple relationship education in Australia

In Australia, the strengthening of marriage through relationship education has received strong governmental policy support and some modest financial support. Couple relationship education services are offered by a variety of community-based, church-affiliated, and church-based providers. There is a strong emphasis on providing programs that are developed locally in response to perceived couple needs and government policies. Available evaluations show that most couples who attend education value the service, but relationship education providers need to do a better job reaching out to couples at high risk for future relationship problems, and more research is needed on the effects of education on long-term marital outcomes. There is significant scope for building on current initiatives to incorporate evidence-based approaches and to expand the program reach to more couples