“…<i>It might not have occurred to my husband that this woman, his wife who is taking care of him has some emotional needs as well…</i>”: The Unheard Voices of Partners of Black African and Black Caribbean Men with Prostate Cancer

© 2018, Springer-Verlag GmbH Germany, part of Springer Nature. Purpose: Evidence suggests that partners of men with prostate cancer (CaP) experience greater psychosocial distress compared with men themselves. However, the experiences of partners of high-risk (1 in 4) Black African (BA) and Black Caribbean (BC) men with CaP remain poorly understood as existing research has predominantly focused on Caucasian populations. This study aimed to address this gap by exploring partners’ experience and support needs as influenced both by the specific impacts of CaP, treatment side effects and socio-cultural context. Methods: Using a constructivist grounded theory approach, eight face-to-face, two Skype and one telephone interviews were conducted with eligible partners (n = 11). The interviews were analysed using constant comparison following key stages of open, focused and theoretical coding. Results: Three broad categories emerged which described participants’ experiences: ‘partner in the passenger seat’, ‘care-giving on an isolating journey’, and ‘coping as a partner’. Findings showed that BA and BC cultural marital context influenced how partners experienced and traversed the CaP journey. Peripheral involvement in decision-making, communication restrictions, limited access to support and lack of recognition for their experiences and needs further contributed to partners’ psychological and emotional distress. Conclusions: Cultural beliefs, behaviours and values should be taken into account when developing psychosocial support for partners and their men with CaP. Specifically providing information focused on partners and including them in the CaP care pathway could help ensure that partners’ needs are recognised and improve marital communications. This could potentially help partners and their men to identify acceptable ways of supporting each other throughout the CaP experience

The Baby Hearts Study – A case-control protocol with data linkage to evaluate risk and protective factors for congenital heart disease

Introduction The Baby Hearts study aimed to investigate risk and protective factors for congenital heart disease (CHD), and to investigate the health behaviours of a representative sample of pregnant women in Northern Ireland. Objectives We describe and evaluate the population-based case-control design enhanced with data linkage to administrative health data. Methods Cases (mothers of babies with CHD, n=286) were recruited following diagnosis prenatally or postnatally. Controls (mothers of babies without CHD, n=966) were recruited at 18-22 weeks gestation, from all women attending each maternity unit during a designated month. Hybrid data collection methods were used, including a self-administered iPad/postal questionnaire, and linkage to maternity and prescription records. Results Refusal rates were low (8%). iPad questionnaire completion at clinic or home visit had high acceptability whereas postal questionnaires were poorly returned leading to a further 9-10% loss of eligible cases/controls. In total, 61% of eligible cases and 68% of eligible controls were recruited, closely representative of the Northern Ireland population, with no evidence of selection bias. Of those recruited, 97% gave consent for linkage to medical records. Thirty-three percent of women had an unplanned pregnancy and 76% suspected they were pregnant by 5 weeks gestation, with no significant differences between cases and controls. There was considerable discordance between self-report, maternity and prescription records regarding medications obtained/taken in the first trimester, but no evidence of differences between cases and controls that would indicate substantial recall bias. Although there was high concordance between self-report and maternity records regarding folic acid supplementation, cases had significantly lower concordance than controls. Conclusions Our results suggest hybrid data collection approaches are a useful way forward for aetiological studies to reduce responder burden and address and estimate recall bias, and that the Baby Hearts study protocol is suitable for replication in other populations, modified to the local context

The Northern Ireland Baby Hearts Study: A Case-Control study using a hybrid data linkage method

Background The Northern Ireland (NI) Baby Hearts study aimed to investigate risk factors for congenital heart defects (CHD), and to investigate the health behaviours of a representative sample of NI pregnant women. Methods We performed a case-control study with hybrid data collection methods, including self-administered iPad questionnaire or postal questionnaire, information held in maternity records and linkage to prescription records. Cases (n=286) were recruited following diagnosis prenatally or postnatally, controls (n=966) were recruited during recruitment months in each maternity unit at 18-20 weeks gestation. Findings Refusal rates for questionnaire completion were low (7-8%). Among those recruited, consent for access and linkage to medical records was high (98%). Recruitment of both cases and controls was closely representative of the NI population in terms of age, area of residence and deprivation. There was considerable discordance between self-report questionnaires, maternity records and prescription records regarding medications taken in the first trimester, and between self-report questionnaires and maternity records regarding behaviours such as preconceptional folic acid, pregnancy planning, and smoking. However, there were no differences between cases and controls that would indicate recall bias. Conclusions Our results suggest that hybrid data collection approaches are a useful way forward for aetiological studies

Life after prostate cancer: A systematic literature review and thematic synthesis of the post-treatment experiences of Black African and Black Caribbean men

© 2017 John Wiley & Sons Ltd Evidence shows that there are significant ethnic variations in prostate cancer prevalence and outcomes. Specifically, Black African and Black Caribbean men may encounter different post-treatment experiences than Caucasian men due to their disproportionately higher risk of being diagnosed with advanced prostate cancer. But to date, no review of these experiences has been undertaken. This review synthesised findings from existing literature on the post-treatment experiences of Black African and Black Caribbean men with prostate cancer and identified pertinent issues which may be useful to inform practice and future research. Seven databases were systematically searched using developed search terms. Four qualitative studies were identified and critically appraised. Findings are summarised under four main themes: symptom experience, healthcare experience, marital and social relationships and coping strategies. Cultural definitions of masculinity influenced the meanings men gave to their post-treatment experiences. While men's experiences of healthcare varied, the provision of professional support to address their post-treatment distress was lacking. Men derived most support from wives, peers and church communities. A culturally sensitive approach which recognises diversity among Black African and Black Caribbean populations and treats individuals within their religious and socio-cultural contexts could potentially improve men's post-treatment experiences. Areas for further research were also identified

Risk Factors for Congenital Heart Disease: the Baby Hearts Study, a population-based case-control study

We investigated the role of maternal environmental factors in the aetiology of congenital heart disease (CHD). A population-based case-control study (242 CHD cases, 966 controls) was conducted using an iPad questionnaire for mother with linkage to maternity and first trimester prescription records. Risk of CHD was associated with low maternal education (OR adjusted for confounders 1.59; 95% confidence interval [CI], 1.02-2.49), pregestational diabetes (OR 4.04; 95% CI 1.00-16.28), self-reported maternal clotting disorders (adjOR 8.55, 95%CI 1.51-48.44), prescriptions for the anticlotting medication enoxaparin (adjOR 3.22, 95%CI 1.01-10.22) and self-reported vaginal infections (adjOR 1.69, 95%CI 1.01-2.80). There was no strong support for the hypothesis that periconceptional folic acid supplements have a protective effect, but there was a protective effect of frequent consumption of folate rich fruits (adjOR 0.64, 95%CI 0.47-0.89). Compared to the most common pre-pregnancy dietary pattern, CHD risk was associated with a poor diet low in fruit and vegetables (adjOR 1.56, 95%CI 1.05-2.34). Mothers of cases reported more pregnancy related stress (adjOR 1.69; 95% CI 1.22-2.34) and multiple stressors (adjOR 1.94, 95%CI 0.83-4.53). We found no supportive evidence for CHD risk being associated with obesity, smoking, depression or antidepressant use in this population. Our findings add to the previous evidence base to show potential for public health approaches to help prevent CHD in future by modifying environmental factors. Independent confirmation should be sought regarding elevated CHD risk associated with maternal blood clotting disorders and their treatment, since we are the first to report this