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Background The Translating Research in Elder Care (TREC) program is a partnered health services research team that aims to improve the quality of care and quality of life for residents and quality of worklife for staff in nursing homes. The TREC team undertook several activities to enhance the collaboration between the academic researchers and us, the citizen members. Known as VOICES (Voice Of (potential) Incoming residents, Caregivers Educating uS) we aim to share our experience working with a large research team. Methods We reflect on the findings reported in the paper by Chamberlain et al. (2021). They described the findings from two surveys (May 2018, July 2019) that were completed by TREC team members (researchers, trainees, staff, decision-makers, citizens). The survey questions asked about the respondents’ experience with citizen engagement, their perceptions of the benefits and challenges of citizen engagement, and their unmet needs for training. Results The paper reported on the survey findings from all the survey respondents (research team, decision-makers, citizens), but much of the results focused on the researcher perspective. They reported that respondents believed that citizen engagement was a benefit to their research but noted many challenges. While we appreciate the researchers’ positive perceptions of citizen engagement, much work remains to fully integrate us into all stages of the research. We offer our reflections and suggestions for how to work with citizen members and identify areas for more training and support. Conclusions Despite the increased interest in citizen engagement, we feel there is a lack of understanding and support to truly integrate non-academic team members on research teams. We hope the discussion in this commentary identifies specific areas that need to be addressed to support the continued engagement of citizens and show how the lived experience can bring value to research teams., Plain English Summary Engaging people with lived experience on research teams is becoming more of an expectation for researchers. Published research on this type of engaged research often focuses on the researcher experience with partnered research and neglects the citizen perspective. We are the citizen members of the Translating Research in Elder Care (TREC) program of research, a research program focused on older adults living in nursing homes. Known as VOICES (Voice Of (potential) Incoming residents, Caregivers Educating uS) we aim to share our experiences of working within a large research team. In this commentary we reflect on the pitfalls and opportunities for citizen engagement and reflect on findings from a recent paper published by the research team on the experience of citizen engagement over time.

Background: East African countries have high rates of maternal and child mortality and morbidity. Studies have shown that involvement of male partners in reproductive health can benefit maternal and child health. This scoping review aims to provide an overview of the evidence across East Africa that describes male partner involvement and its effect on maternal and child wellbeing in reproductive, maternal or child health. Methods: Ten databases were searched to identify quantitative data on male’s involvement in East African countries. Studies reporting qualitative data, non-East-African samples, ‘intention to use’ data or only reporting on male partner’s education or economic status were excluded. Studies were organised into five a priori categories: antenatal care (ANC), human immunodeficiency virus (HIV), breastfeeding, family planning, and intimate partner violence (IPV) with further categories developed based on studies included. Results: A total of 2787 records were identified, 644 full-texts were reviewed and 96 studies were included in this review. Data were reported on 118,967 mothers/pregnant women and 15,361 male partners (typically reported by their female partners or coparents). Most of the studies (n=83) were reported from four countries Ethiopia (n=49), Kenya (n=14), Tanzania (n=12) and Uganda (n=10). The evidence indicates that male partner involvement and support is associated with improved reproductive, maternal and child health across a wide range of outcomes. However, the studies were heterogenous, using diverse exposure and outcome measures and reporting varying effect sizes, levels of men’s involvement and types of support. As well, male partners’ lack of practical and emotional support, and engagement in violent behaviours towards partners, were associated with profound negative impacts on maternal and child health and wellbeing. Conclusions: The body of evidence, although heterogenous, provides compelling support for male involvement in reproductive health programs designed to support maternal and child health. To advance research in this field, agreement is needed on a measure of male partner 'involvement'. To optimise benefits of male partner’s involvement, developing core outcome sets and regional coordination across health conditions are recommended.

Background Maternal mortality remains a pressing concern across Sub-Sahara Africa. The ‘Three Delays Model’ suggests that maternal deaths are a consequence of delays in: seeking care, reaching medical care and receiving care. Birth Preparedness and Complication Readiness (BPCR) refers to a plan organised during pregnancy in preparation for a normal birth and in case of complications. Male partners in many Sub-Saharan African communities could play a pivotal role in a woman’s ability to prepare for birth and respond to obstetric complications. This review aimed identify: the extent and quality of research performed on the topic of male partner involvement in BPCR in Sub-Saharan Africa; the degree to which populations and geographic areas are represented; how male partner involvement has been conceptualized; how male partners response to obstetric complications has been conceptualised; how the variation in male partners involvement has been measured and if any interventions have been performed. Methods In this scoping review, articles were identified through a systematic search of databases MEDLINE, EMBASE and Maternity and Infant Care and a manual scan of relevant papers, journals and websites. All authors contributed to the screening process and a quality assessment using the Kmet checklist. The PRISMA checking list for Scoping Reviews was used to guide the search, data charting and reporting of the review The protocol was registered with PROSPERO (ID: CRD42019126263). Results Thirty-five articles met inclusion criteria, reporting: 13 qualitative, 13 cross-sectional, 5 mixed method and 4 intervention studies. Data were contributed by approximately 14,550 participants (numbers were not always reported for focus groups) including: women who were pregnant or who had experienced pregnancy or childbirth within the previous 3 years, their male partners and key informants such as health workers and community leaders. Conclusions The diversity of study designs, aims and source countries in this body of literature reflects an emerging stage of research; as a result, the review yielded strong evidence in some areas and gaps in others. Male partner’s involvement in BPCR and responding to obstetric emergencies can be conceptualised as being centrally involved in responding to complications and having some role in preparing for birth through their position in the chain of decisions and provision of logistic support. However, their knowledge of pregnancy complications and level of preparation for birth is low, suggesting they are making decisions without being fully informed. There is limited evidence on interventions to improve their knowledge. Future research efforts should be focused on producing standardised, culturally appropriate, higher level evidence.

Background The Translating Research in Elder Care (TREC) program is a partnered health services research team that aims to improve the quality of care and quality of life for residents and quality of worklife for staff in nursing homes. This team includes academic researchers, trainees, research staff, citizens (persons living with dementia and family/friend caregivers of persons living in nursing homes), and decision-makers (ministries of health, health authorities, operators of nursing homes). The TREC team has experience working with health system partners but wanted to undertake activities to enhance the collaboration between the academic researchers and citizen members. The aim of this paper is to describe the TREC team members’ experiences and perceptions of citizen engagement and identify necessary supports to promote meaningful engagement in health research teams. Methods We administered two online surveys (May 2018, July 2019) to all TREC team members (researchers, trainees, staff, decision-makers, citizens). The surveys included closed and open-ended questions guided by regional and international measures of engagement and related to respondents’ experience with citizen engagement, their perceptions of the benefits and challenges of citizen engagement, and their needs for training and other tools to support engagement. We analyzed the closed-ended responses using descriptive statistics. Results We had a 78% response rate (68/87) to the baseline survey, and 27% response rate (21/77) to the follow-up survey. At baseline, 30 (44%) of respondents reported they were currently engaged in a research project with citizen partners compared to 11(52%) in the follow-up survey. Nearly half (10(48%)) of the respondents in the follow-up reported an increase in citizen engagement over the previous year. Respondents identified many benefits to citizen engagement (unique perspectives, assistance with dissemination) and challenges (the need for specific communication skills, meeting organizing and facilitation, and financial/budget support), with little change between the two time points. Respondents reported that the amount of citizen engagement in their research (or related projects) had increased or stayed the same. Conclusions Despite increasing recognition of the benefits of including persons with lived experience and large-scale promotion efforts, the research team still lack sufficient training and resources to engage non-academic partners. Our research identified specific areas that could be addressed to improve the engagement of citizens in health research. Supplementary Information The online version contains supplementary material available at 10.1186/s40900-021-00314-w., Plain English Summary Engaging non-academic research partners is becoming an expectation for Canadian health research teams. Research specifically on citizen (patient) engagement has identified benefits and challenges of partnered research; however, most research has only examined one time point. Less is known about how the perception of engagement may change with exposure to engagement in research activities. Translating Research in Elder Care (TREC) is a research program that aims to improve the quality of care and quality of life for residents, and quality of work life of staff in nursing homes. The team includes academic researchers, citizens (the term preferred by our members to reflect persons with dementia, family/friend caregivers of individuals living in nursing homes), decision-maker stakeholders (e.g., ministries of health, operators of nursing homes), trainees (Masters, PhD, postdoctoral fellows), and staff. The TREC team initiated several activities to deepen the partnerships with our citizen members. This paper describes the teams’ perceptions of engagement and the benefits and challenges of citizen engagement in an established health research team. We invited the TREC team to complete an online survey (May 2018) before undertaking engagement activities (e.g., training, priority setting) and after 15 months of activities (July 2019). We asked respondents questions about their experience with citizen engagement, their perceptions of the potential research activities citizens could be engaged in, and the benefits and challenges of citizen engagement. Research team respondents reported an increase in citizen engagement in their research but that needs for support persisted. We identify specific areas where research teams need more training and support to ensure that engaged research is possible and sustainable. Supplementary Information The online version contains supplementary material available at 10.1186/s40900-021-00314-w.

The study aimed to document the preferences of fathers in accessing and using parenting supports and to investigate the influence of a range of family contextual factors including paternal mental health, child disability, the co-parenting relationship and parenting sense of efficacy on fathers’ help-seeking. Participants included a representative sample of 1,044 fathers of zero- to 18-year-olds. Results suggest that most fathers feel supported in their parenting role and rely on their own efforts (e.g. online searches) for information to support their parenting in preference to in-person interactions with professionals or attendance at groups. The co-parenting relationship and paternal mental health were also identified as important factors impacting on paternal help-seeking behaviours. These results from one of the largest surveys of fathers of its kind provide credible insights into the parenting help-seeking experiences and support needs of fathers, with clear implications for policy makers and service providers.

Background Family-centred maternity care models include the expectation that fathers prepare for and attend the birth. In Australia over 20% of the population is from a culturally and linguistically diverse background. Public policies espouse culturally competent healthcare. Little is known about the experiences of perinatal health care of men from culturally and linguistically diverse (CALD) communities living in high income countries. The aim was to understand the experiences, attitudes and beliefs about father’s inclusion in perinatal healthcare, from the growing, and recently settled community of Ethiopian families living in Australia. Methods A qualitative study using semi-structured individual interviews with Ethiopian-Australian men and women who had experienced Australian maternity care and were sampled for diversity of time since migration, and parity. Interviews were in English, audio-recorded, transcribed and then analysed thematically. Results Participants were seven women and six men all born in Ethiopia, including two couples. Key themes included: the loss of extended family through migration, new roles for both parents and the need to establish ‘family-like’ relationships with friendship groups in Australia. There was a willingness to involve male partners in the Ethiopian community in Australia, although it was recognised as a cultural change. Experiences of male partner involvement were mixed among healthcare types, with men attending Maternal and Child Health (MCH) appointments less frequently than antenatal (ANC) appointments. Conclusions Results suggests men may be missing out on the education provided during antenatal appointments and may benefit from an alternative. There were not universally high levels of cultural competency among healthcare professionals, with further training still required. Commitment to paid employment remains a barrier to men’s involvement, suggesting that flexible working conditions and increased paternity leave would support their involvement. Alternatively services could utilise flexible delivery methods such as phone and zoom to include fathers.

To give FPs an understanding of the "lived experience" of dementia via the words of a person with dementia (PWD)- Faye Forbes, a 64-year-old Anglican priest with Alzheimer disease who provides her perspectives on living with dementia-and to use these thoughts to improve care and outcomes.Ovid MEDLINE was searched from January 2005 to February 2015 using subject headings for dementia, caregiver, perspectives, and quality of health care. Articles geared toward FPs were selected. Relevant review articles and original research articles were used when appropriate and if they were applicable to PWDs and their caregivers.There are several frameworks that organize the main experiences described by patients and caregivers. We used a review of the qualitative literature to provide the framework to summarize Faye's experience under the following headings: seeking a diagnosis, accessing supports and services, information needs, disease management, and communication and attitudes.Physicians should consider these themes when developing a management plan for PWDs. Trying to understand the experiences and perspectives of PWDs and their caregivers is important in providing optimal care.