Improving the capacity of researchers and bereaved parents to co-design and translate stillbirth research together.

BACKGROUND: Working with bereaved parents in co-designed stillbirth research, policy and practice is essential to improving care and outcomes. PROBLEM: Effective parent engagement is often lacking. This may be due to bereaved parents not feeling adequately and appropriately supported to be involved. AIM: To consult bereaved parents with the aim to understand their experiences, attitudes, and needs around involvement in stillbirth research and gain feedback about the usefulness and appropriateness of a proposed co-designed guide to support their involvement, including content and design aspects of this resource. METHODS: An online co-designed survey was disseminated via Australian parent support organisations social media in August 2022. FINDINGS: All 90 respondents were bereaved parents, 94% (n = 85) were female. Two-thirds (67%, n = 60) had never participated in stillbirth research, 80% (n = 72) agreed involvement of bereaved parents in research was important or extremely important and 81% (n = 73) were interested in future research involvement. Common motivations for involvement were wanting to leave a legacy for their baby and knowing research outcomes. Common barriers included not having been asked to participate or not knowing how. Most (89%, n = 80) agreed the proposed guide would be useful. Highly valued topics were the importance of bereaved parents' voices in stillbirth research and how they can make a difference. CONCLUSION: The majority of bereaved parents we surveyed want to be involved in stillbirth research and would value a resource to support this. The proposed concept and content for a co-designed guide to aid engagement was well supported.

Knowing your audience: Investigating stillbirth knowledge and perceptions in the general population to inform future public health campaigns.

BACKGROUND: The prevalence of stillbirth in many high income countries like Australia has remained unchanged for over 30 years. The 2018 Australian government Senate Select Committee on Stillbirth Research and Education highlighted the need for a public health campaign to encourage public conversations and increase awareness. However, there is little evidence about the community's knowledge and perceptions towards pregnancy and stillbirth, nor their aspirations for a public health campaign. AIMS: To assess the general knowledge, perceptions, myths and attitudes towards stillbirth to inform future public health campaigns. METHODS: Australian participants (n = 344; predominately women n = 294 (85.5%)) were recruited via Facebook.com. They completed a cross-sectional online survey designed to assess their knowledge of pregnancy and stillbirth, with additional questions on socio-demographic characteristics. RESULTS: Stillbirth knowledge and awareness of incidence was low in this sample. Prominent myths, such as baby runs out of room in the uterus (n = 112, 33%) and baby slows down when preparing for labour (n = 24, 27%) were endorsed. Only 25% (n = 85) knew the prevalence of stillbirth in Australia (six per day). Almost two-thirds (n = 205; 62%) agreed that there needs to be a public health campaign, however one in five (n = 65; 20%) were concerned that talking about stillbirth with pregnant women may cause them to worry. DISCUSSION AND CONCLUSION: Our findings reinforce the need for a targeted campaign, which educates the general population about the definition and prevalence of stillbirth, stillbirth risks and modifiable health behaviours. Appropriate messaging should target pregnant women during antenatal care as well as their support and care systems (family, friends, and care providers).

Sexual and reproductive health in men with cystic fibrosis: consistent preferences, inconsistent practices.

BACKGROUND: Sexual and reproductive health (SRH) is increasingly relevant for men with CF. However, the extent of similarities or differences in SRH clinical practices across different centres or states is unknown as single clinic studies are not informative about variations in male preferences or clinical practices. We wished to determine the variability of male SRH knowledge and preferences, and clinical practices across different CF clinics. METHODS: Men attending 5 adult CF clinics in Australasia completed a survey of SRH knowledge, attitudes and behaviours. RESULTS: 264 (64%) men participated, with a median age of 30 years (17-56). 65% knew of near universal infertility due to a transport problem. 43% heard about infertility from their preferred source, but significantly later than desired. Less than half had undergone semen analysis (SA), which, while varying by site, was consistently later than preferred. 57 men were fathers, of whom 29 had utilised ART. CONCLUSION: Men's preferences around SRH were more consistent than clinical practices. Clinical practice guidelines and training for health professionals would help reduce the gap between men's SRH preferences and clinical practice.

A survey of sexual and reproductive health in men with cystic fibrosis: new challenges for adolescent and adult services.

BACKGROUND: Improved survival dramatically alters the consequences of adult co-morbidities in men with cystic fibrosis (CF) such as male infertility. Few studies have systematically addressed the impact of sexual and reproductive health issues in these men or considered the implications for healthcare delivery. METHOD: A descriptive cohort study was undertaken using a sexual and reproductive health survey of men from a large adult CF centre, including men with lung transplantation. RESULTS: The mean (SD) age of the 94 men (response rate 75%) was 30.5 (7.6) years. 94% knew that men with CF had reduced fertility. Men first heard about infertility later than desired (p<0.001) and only 53% heard from their preferred source. Men who were told about infertility when older were more likely to be upset than those told earlier (p<0.01). 53% of men had undergone semen analysis: 68% of men who had not been tested wanted semen analysis. 73% believed semen analysis should occur before 18, but the youngest age of testing was 24 years. In adolescence, one in three men had assumed they did not need to use condoms and one in 10 had confused infertility with impotence. 66% of men wanted more information on reproductive options and 84% wanted children. Seventeen men were parents by natural conception (n = 1), micro-epididymal sperm aspiration (n = 6), donor sperm (n = 9), and through step children (n = 1). CONCLUSIONS: Men with CF desire more sexual and reproductive health information. Earlier discussion of sexual and reproductive health is indicated in paediatric settings, and semen analysis should be routinely offered. In adult services greater discussion of reproductive health options is indicated.

Health care delivery: perspectives of young people with chronic illness and their parents.

OBJECTIVE: To identify and compare perceptions of health care service delivery held by young people with chronic illness and their parents. METHODS: A convenience sample of young people with chronic illness and their parents were invited to complete a confidential self-report survey. The adolescents were aged 13-18 years inclusive and attended a specialist medical clinic. RESULTS: Participants comprised 53 young people (response rate 88%, 53/60) and 45 parents (response rate 75%, 45/60). Both young people and their parents rate honesty, confidentiality, having good medical knowledge and good listening skills as the most important qualities for a health care provider. Compared to the parent group, fewer young people report the presence of these desired qualities in their current health care provider. A quarter of young people (25%, 13/53) report they do not always trust health professionals to keep their information confidential, and 19% (10/53) of young people report having withheld information from a health professional due to a lack of trust. Some parents and young people would like to discuss a wider range of health topics, including mental health issues, than they currently do with their health provider. Young people and their parents report limited planning with their current health provider for transition to adult health services. CONCLUSIONS: Young people with chronic illnesses have significant levels of dissatisfaction with the health care they receive; this has the potential to impact on their use of health care services and their health outcomes. There is a need for increased provider awareness of the important qualities of health care service delivery to young people.

Outcome of infants receiving in-utero transfusions for haemolytic disease.

AIMS: To review the outcome of infants who received in-utero transfusion (IUT) at National Women's Hospital (NWH). Specifically to determine postnatal exchange and top-up transfusion requirements, to examine perinatal factors useful for predicting this and review neurodevelopmental status of recipients. METHODS: A review was undertaken of infants delivered at NWH between 1991 and 2000, who had received one or more IUT for haemolytc disease. The mean gestational age at birth was 34 weeks and birth weight 2298 g. The median number of IUT was four (range 1-9). The mean gestational age at the first IUT was 25 weeks and at last IUT was 31 weeks. RESULTS: All 37 infants survived to discharge. Postnatal exchange transfusion was required in ten and top up transfusion in 27 infants. Late transfusion (>3 weeks) was required in 21 infants. Follow-up information on 36 infants revealed one born prematurely following death of a co-twin had cerebral palsy and developmental delay. No other infant had audiology or neurodevelopmental abnormality. CONCLUSIONS: This review helps to confirm the good outcome following IUT although some infants continue to require transfusions for up to four months after birth.