Involving patients and the public in health research can help ensure the relevance and suitability of research and improve the quality of the research outcomes (Staniszewska et al, 2011). While ensuring that public contributors are embedded in a meaningful way throughout the research cycle is an expectation for UK health and social care research, it can be challenging to involve patients and the public in ways that are meaningful and have impact. In the UK, ethnic minority groups are especially under-represented in medical research (Smart and Harrison, 2017).
A survey conducted by the National Institute for Health Research (2019) on public involvement suggested that young people and minority ethnic communities remained under-represented in public involvement; only 16% of public contributors surveyed were under 50 years old, while Asian ethnic groups represented only 3% of respondents and Black ethnic groups only 2%. For maternity and postnatal research, this disparity was even more concerning. UK reports on maternal and perinatal mortality suggest that women from minority ethnic backgrounds are significantly more likely to lose their babies or die during or after their pregnancy compared to their White British counterparts (Draper et al, 2019; Knight et al, 2020). Therefore, increased involvement in research from diverse communities needs to be part of addressing this issue.
Under-representation of pregnant women, their partners and parents from minority ethnic backgrounds has been noted in research involving the perinatal period and child health (Pellecchia et al, 2018; National Institute for Health Research, 2020; Lut et al, 2022). Few studies to date have explored the experiences of parents from minority ethnic groups participating in healthcare research. Lovell et al (2023) conducted a mixed-methods systematic review that explored factors that influenced minority ethnic women's participation in maternity research. This review was first of its kind to examine participation in maternity research for women from minority ethnic populations. It highlighted the importance of using a personalised approach to recruitment and incorporating culturally sensitive communication to build rapport with potential participants. A woman's decision to participate was negatively impacted by mistrust of data sharing, a sense of danger associated with research participation, and research that did not personally resonate with the participants (Lovell et al, 2023). However, this review identified large variations in the quality of included studies and concluded that there was a lack of rigorous research into factors influencing the decision to participate in maternity research for women from minority ethnic backgrounds (Lovell et al, 2023).
Only three of the included papers in the review were from the UK, while the remaining 11 were from the USA. The authors stated that ‘further research is needed to more accurately evaluate the multi-faceted influences affecting ethnically diverse recruitment to maternity research and to investigate the strategies that can facilitate this’ (Lovell et al, 2023). Furthermore, the review only focused on women's views and experiences; men's views and experiences of participating in research during the perinatal period remain unknown.
The aim of the present study was to provide a broader understanding of the experiences of parents from minority ethnic groups participating in healthcare research. This included exploring barriers and facilitators to research participation in the perinatal period (from pregnancy to 1 year after birth).
Methods
The study aims and objectives were addressed using a qualitative approach. Selecting an appropriate qualitative approach was crucial, and this study required a pragmatic approach centred on the research subject of interest rather than adhering to a particular epistemological position (Ritchie et al, 2014). The use of a qualitative method facilitated the production of rich data, allowing an in-depth exploration of parents' experiences of research participation, as well as the associated barriers and facilitators.
Participants
Parents from ethnic minority groups (both those expecting a child and who had recently given birth) were recruited through the maternity department of the London North West University Healthcare Trust, which provides healthcare services to three boroughs where minority ethnic groups represented 57–64% of the overall total population (Office for National Statistics, 2021). The largest ethnic minority group in these boroughs were Asian groups (30–45%), followed by the Black groups (7–18%), with Indians ranking highest in all three boroughs (Office for National Statistics, 2021), making this an ideal setting for the study.
Recruitment took place using purposive sampling, using three methods reported to be effective in a previous UK study of pregnant women from South Asian origins (Neelotpol et al, 2016). Study posters were displayed on hospital notice boards in antenatal, postnatal and child health clinic areas. Leaflets were distributed among potential participants in antenatal and clinics, antenatal and postnatal wards and infant feeding classes. Healthcare professionals also directly approached potential participants at hospital antenatal clinics, parent education classes and waiting areas. In addition, the posters and leaflets were shared and promoted through the trust's interpreting services and local health visiting services.
Pregnant women and their partners and parents with a child up to 12 months old who identified as being from a minority ethnic group were eligible to participate in the study. Parents experiencing bereavement or those with severe mental illnesses were excluded. Table 1 shows the full inclusion and exclusion criteria.
| Inclusion | Exclusion |
|---|---|
| Pregnant women from 20 weeks' gestation and their partner |
Parents experiencing bereavement following neonatal death, stillbirth, pregnancy loss or sudden infant death |
A total of 16 parents were recruited between August 2023 and February 2024. Initially 29 parents were interested in participating, but 13 subsequently either refused, or did not attend the scheduled interview. This was despite several attempts made to contact them. Where reasons for non-participation were obtained, these mainly related to a lack of time for participation. Many participants who did not attend the scheduled interviews (pre-booked appointments), also did not respond to any subsequent communication from the research team.
Data collection
Parents interested in taking part either contacted the researchers directly or gave consent for their contact details to be shared with the research team. In-depth qualitative interviews were conducted via Microsoft Teams by all three researchers with a purposive sample of 16 parents until no new information was forthcoming and data saturation was reached.
A topic guide was developed to provide structure and focus to the interviews, which comprised open questions with prompts that enabled participants to express their views, reasons and explanations. The topic guide was piloted during the first three interviews and no further refinement to the guide was deemed necessary.
The interviews were recorded and transcribed using the Microsoft Teams transcribing system and the transcriptions were checked by the researchers for accuracy and corrected as necessary. Interviews lasted between 9 and 25 minutes, with the average lasting 14 minutes. Personal reflections (on the environment, context, general observations and thoughts) were noted by the researchers after each interview to aid data analysis.
Data analysis
Data were analysed using thematic analysis, which involved familiarisation with the data, generation of initial codes, searching for themes, reviewing themes, defining and naming themes and producing the report (Braun and Clarke, 2021). This method enabled identifying, analysing and interpreting the patterns and meaning in the qualitative data. This method is not tied to a particular epistemological or theoretical perspective, making it flexible and appropriate for this study (Maguire and Delahunt, 2017).
The interview transcripts were read and re-read by all researchers independently. Each researcher individually coded a selection of transcripts and identified initial themes. These were then discussed among the researcher team and reviewed, resulting in a set of agreed themes. The first author (SB) analysed the full set of transcripts and maintained communication with the research team (AP, DL) through meetings and regular emails to ensure methodological consistency throughout the data analysis process.
Research team and reflexivity
At the time of the study, all three researchers (healthcare professionals) worked in the hospital trust where the study was undertaken, and identified as being from three different minority ethnic backgrounds. Reflexive journals were kept throughout to document their personal reflections of their values, interests and insights. This was important in enabling the researchers to acknowledge any potential risk of personal bias. Personal reflections were discussed in regular research team meetings to reduce the risk of personal bias affecting the data interpretation process.
Patient and public involvement
Three parents (two mothers and one father) from minority ethnic groups provided input in guiding the planning and conduct of the study. Feedback from these parents was important for the development of all research documents, the recruitment strategy, data analysis process and dissemination of findings.
Ethical considerations
The study was conducted in compliance with the research governance framework for health and social care and good clinical practice. Health Research Authority (reference: 286212/) and Health and Care Research Wales approval was received for this study (reference: 23/SC/0072).
Participants were given an information sheet and written informed consent was obtained prior to participation. All interviews were carried out on a voluntary basis and participants could withdraw from the study at any stage. Once transcribed, the interview recordings were deleted, as per the study protocol. Participant details were anonymised in the illustrations used, to protect their identity.
Results
Of the 16 participants, 14 were women and two men. Their ages ranged from 25–44 years, with the largest proportion aged 30–34 years (38.5%). Nine were currently expecting a child, while the remaining seven had a child aged 0–12 months. The majority of parents described their ethnic background as Indian (68.8%). Table 2 shows full participant characteristics.
| No. | Pregnant | Child's age (months) | Relationship to child | Age (years) | Ethnic group |
|---|---|---|---|---|---|
| P1 | No | 0–3 | Mother | 30–34 | Black Caribbean |
| P2 | No | 0–3 | Mother | 30–34 | Sri Lankan |
| P3 | No | 0–3 | Mother | 25–29 | Indian |
| P4 | Yes | N/A | Mother | 25–29 | Indian |
| P5 | No | 9–12 | Mother | 25–29 | Black African |
| P6 | Yes | N/A | Mother | 30–34 | Indian |
| P7 | Yes | N/A | Mother | 40–44 | Black African |
| P8 | Yes | N/A | Mother | 35–39 | Indian |
| P9 | Yes | N/A | Mother | 35–39 | Indian |
| P10 | Yes | N/A | Father | 35–39 | Indian |
| P11 | Yes | N/A | Mother | 35–39 | Indian |
| P12 | Yes | N/A | Mother | 30–34 | Indian |
| P13 | Yes | N/A | Mother | 40–44 | Black British |
| P14 | No | 6–9 | Mother | 25–29 | Indian |
| P15 | No | 0–3 | Mother | 30–34 | Indian |
| P16 | No | 0–3 | Father | 30–34 | Indian |
Seven overarching themes were identified through the analysis: motivating factors; unique contributions; language, understanding and access; cultural values, beliefs and practices; lack of time and other commitments; facilitators for participation; and experience of the current study.
Motivating factors
The majority of participants (n=13, 81%) had not taken part in any previous research and were unaware of other healthcare research studies taking place. The main motivating factor for participating in the present study was the desire to share their experiences to make a positive contribution to improving services for other parents.
‘This was my first pregnancy here in the UK so I wanted to contribute’.
‘I thought maybe I should participate because of what I've gone through. I don't want anybody else to go through it again’.
For some, their interest in the research topic and curiosity was a contributory factor.
‘I just thought it's something different and it was well explained when we went to the breastfeeding class and … I've never really taken part in anything, so I thought “let's give it a try”’.
‘I just want to know more. I just want to give my views … I was just curious about what would be the outcome’.
The motivation to participate was also influenced by the individual experiences of being a parent, their professional background and knowledge of the research topic. One participant talked about how ‘being from a healthcare background [herself]’ (P1) had encouraged her participation, while others felt they could contribute because they had ‘knowledge about that topic’ (P6) or felt ‘emotionally connected’ (P8) to the study.
Generally, participants talked about the importance of being able to relate to the study topic and feeling knowledgeable enough to contribute. The relatability to the topic also extended to ethnicity, where participants felt their ethnicity placed them in an ideal position to contribute to this particular study.
‘This exactly suits me, I am an ethnic minority and a new parent’.
‘This was focused on Asian, African people, my community or cultural background. If I don't participate, then how are you going to collect the data?’
For one parent, this desire to help was also influenced by their previous experience of the healthcare service which had been positive.
Unique contributions
All participants felt that they were able to make valuable and unique contributions by providing their views from a minority ethnic perspective. They recognised that there were differences in healthcare practices in other countries compared to the UK, which could impact parental expectations of the care received in the UK setting.
‘[It] may be that … each country would have a different way in which they handle pregnancy and childbirth … different hospitals might have different things that they do. For example, my eldest was born in Dubai and not here. So in Dubai, the hospital didn't really prioritise skin to skin’.
Participants felt that it was important to explore the views of parents from minority ethnic groups to gain a better understanding of cultural differences, which included cultural practices, beliefs, food and child rearing practices.
‘I'm an Indian … So our beliefs, our cultures, everything's entirely different … Their food, their food patterns, their culture, their beliefs, everything is entirely different. So if we are including them in [research], we can get more points of views, we can get more values. And we can come to know what their beliefs are and everything. So we can include that also. Especially for a foreign Indian who is raising their children, it is entirely different from the people who raise their children here. So it depends on the culture values, religious values and everything’.
Understanding the needs of parents from minority ethnic groups was also considered important for changing research ‘statistics’ and improving uptake of research by participants from these groups.
‘Shedding some light into the darkness that is there around ethnic minorities. From the paper you gave me, percentage involvement is still low, so for me taking part in this research adds to the number, getting our numbers up, not just for the numbers sake’.
‘It's not many people from ethnic backgrounds that put themselves forward, so again it would have been a change in statistics as well’.
Language, understanding and access
Although none of the participants required an interpreter, language was mentioned by all participants as a potential barrier to engaging parents from minority ethnic groups in research. In addition, the educational background and level of understanding of research in general and the topic being researched was thought to play a big part in parents' willingness and ability to participate in healthcare research. Where this was the case, the provision of additional support was deemed important.
‘I do think it's education … we've obviously gotten into university … we work … my husband has some experience in the scientific background … I work in a university … even though admin related, I'm exposed to a lot of other things, so I think it does matter what your background is and to what level you're educated to and what you're interests are as well’.
Some participants expressed that access to study information, technological advances and to the physical study sites may act as a barrier.
‘I know a lot of posters nowadays have a QR code that you scan again. You know, if a woman does not know about QR code or doesn't know how to use a phone that's obviously stopping that as well’.
‘If the place is far away from your own place and you have to rely on public transport’.
Cultural values, beliefs and practices
The participants described a number of cultural beliefs that impacted research participation. This included perceiving participation as not part of their cultural norm and something that could bring shame on the family. Some also talked about needing to obtain permission from a family member before being able to participate.
‘When I asked my parents and my grandparents what they think the boundaries were around research, a few of them said that they will be worried about what other people would think if somebody else found out that they were partaking in a study that may not be the norm and there's a lot of that in our culture’.
‘I think maybe it's a cultural thing and probably fear of agreeing to take part in research before maybe informing either their partner or family members, and it may be that they might … need to get the necessary permission … to inform their family, just to hear their views on it, maybe they might not agree with them taking part’.
‘I think maybe they're ashamed to be involved. Maybe sometimes their husband will be like “no, you don't need to go to that”. Or if they have a strict mother-in-law, for example … So maybe the ladies feel like we can't do this. It's a shame upon us, we can't do that’.
There was a strong sense of the need to maintain privacy and not disclose personal information with anyone outside the family.
‘I'm still from the point of view that some of us would probably not want to be subjects. You know like they don't want their life out there. They don't want people to know what's going on in their home’.
One participant did not want to draw too much attention to herself by sharing her own views. She felt this was a result of a power imbalance from being from a country that was previously ruled by Britain.
‘We are part of the colonies here, so we tend to view the former colonisers as kind of like the superior people. So you tend to not want to make too much noise about that or draw too much attention’.
The participants also highlighted that a lack of self-confidence and the fear of ‘saying the wrong thing’ or ‘embarrassing themselves’ was a barrier.
‘I will be like “what if I participate in that one and then my point of view is wrong?”. What will I do? It's like that is the one problem’.
Concerns around confidentiality and a general level of mistrust of the research process and its value were also expressed as specific barriers.
‘My culture in particular, they're very sceptical to enter something that they may not know is safe’.
‘I think they're scared because you don't know what is going into your system. They maybe have it in their mind that these research things are done on animals … They got rats in the labs. Let them, you know, go and test on the rats and such’.
Lack of time and other commitments
Participants talked about busy lifestyles and a lack of time that often prevented them from participating in research. Those who were expecting a child mainly referred to their work commitments, whereas parents who had young children talked about the competing demands of parenthood.
‘As a new parent, there is lack of time, there is lack of sleep and all. So maybe parents may avoid’.
‘When I think for me particularly, working from home parents, they may not really have that much time. It may seem like they have all the time to do this, but while looking after kids, especially the younger ones, it's not so easy’.
This was especially the case for participants who had a lack of extended family support in the country.
‘For someone here, mostly it's only the husband and wife or the partners only. There they are taking care of the baby and one partner will be working. So when the partner comes back the next person will go for the shift or work … It's very difficult to adjust that and then select to participate’.
Facilitators for participation
Participants discussed the importance of a suitable time and place for study participation. Being able to choose what was convenient for them was seen as a key enabler. Some participants felt that offering compensation (in monetary terms or vouchers) for their time would encourage more parents to get involved. Others felt that explaining the benefits of the study and the impact it could make, through their contributions, would be more important than offering a monetary reward.
‘Explaining the benefits of that research to them and like what their contribution will be. So most of them will find the time to take part in that one’.
The manner in which researchers approached and recruited participants played an important role in their decision-making process. Some recruitment was done through healthcare professionals (midwives, medical registrars and consultants) in routine antenatal and postnatal appointments, and some was done directly by the research team. Where the recruiter was enthusiastic about the study and engaged warmly with the participant, explaining the details of study, including the research process, data systems and potential outcomes, participants were more likely to volunteer to take part.
‘If you know that you're going to be safe, I think people will be more comfortable … the nurse asked me, and she was very good at explaining how this could help other people, this pushed me further to want to take part’.
‘I think the personality of the person delivering information about the research also makes it more fluid, more likely for you to be enthusiastic about it or not care about it, is the amount they engage’.
For some participants, having healthcare professionals from minority ethnic groups made them feel more at comfortable and less isolated.
‘My perspective in all the appointments and stuff I've been to, I've been surrounded by different ethnic minorities anyway, so I do feel we're well represented in that area, because the midwives are all different races, which is quite lovely to see from my perspective … And the nurses are too, and even the major doctors and the consultants, it's nice to see a variety of the multicultural within us in that field … So you feel a bit more comfortable being in that environment and don't feel a bit more isolated’.
‘I had an overall positive experience, I think because most of my advice and the medical personnel I met were from an ethnic minority, so I didn't feel it was anything different. It might have been different if I was dealing with someone who's not’.
Feeling more at ease talking to someone from a similar background was important. Participants felt that having a researcher from the same background would enable them to understand and appreciate the participant's situation more than someone who was not from the same ethnic background.
‘If I am telling someone all the things that matters in our ethnic group, if that person is also from the same ethnic, she can understand more of what I am telling. This happens back in our country and I'm telling to a non-ethnic minority person, they might not understand that well’.
The participants suggested ways to increase research participation of parents from minority ethnic groups. Having a variety of methods for recruitment and data collection was seen as important. The use of videos and advertising via social media platforms were mentioned as a way to capture people's attention, compared to more traditional methods of posters and leaflets.
For some, data collection through questionnaires would have been preferred, as it would allow more flexibility around completion. Participants expressed that many parents may be unaware of research studies taking place and therefore more information, education and support around this was necessary.
‘That is my main concern, being a representative of my native, how well the people are aware about the healthcare. That is where I am thinking we need to improve’.
Using a targeted approach and providing potential participants with more information, including the research processes and benefits, and providing assurance around anonymity and confidentiality was perceived as important to improving participation.
To address language barriers, suggestions included bringing together parents who spoke a certain language and having a translator explain the study in detail and answer their question (P11) and making translation apps or online translation platforms available via QR codes that could be scanned by participants to provide study information in the parents' native/chosen language (P9).
‘Word of mouth’ was thought to be a powerful mechanism for recruitment and using different forums to communicate research studies was seen as an important step to increasing engagement.
‘And then people would want to gain, because most of the time we human beings always go with what we see and what we hear through word of mouth’.
‘I know if I came to know about this one, I can tell my friends also. So these are some of things that we can tell them and then they can tell their friends who are happy to participate in that one. So we can also make more people participate in this one’.
Dissemination of study information early in pregnancy and through a range of healthcare professionals was considered helpful.
‘Even there are research topics and all that things I heard now. Most of the time even if I want to take part, I heard it very late’.
‘At the time of registration itself, the GP should have the first point where a person who comes in contact with the healthcare system’.
A few participants highlighted the need for researchers to have a good understanding of cultural differences and some of the challenges that parents from minority ethnic groups may face when participating in research.
‘Just finding out from them what else you can do because maybe the cultures are different and in certain circumstances, maybe someone else might want to be present, and if that is allowed then then probably just take that into consideration as well … in the hospitals some people are chaperoned, so maybe that may be the same as when they do research, they might need to have someone there to support them’.
‘Some of them will be like, “oh, I can't participate in that kind of research. It's against my cultural values. It's against my belief”. So if we came to know about that, that will also help in the research programme’.
Experience of the current study
Overall, participants reported positively about the research processes and approaches used in this study. The study documentation (leaflet, participant information sheet and consent forms) was reported to be adequate and easy to understand.
‘It was actually quite easy to understand with the forms that have sent along and there was also another document that I've read too about what the study was about and what was expected’.
The approaches used during recruitment encouraged parental participation. The main criticism was from parents who were recruited late in pregnancy or following the birth of their baby. They felt that it would have been beneficial for them to know about the study early in pregnancy when they had more time to participate.
‘Should have been earlier in pregnancy’.
‘It would have been really useful if I was given information about research available at the beginning, because at the beginning you have more time, less appointment, so you have a little bit more headspace, so it would been really useful just to have been made aware of things’.
Overall, the participants felt that this study was important as it aimed to address a research gap, and supporting this study was seen as a valuable step taken by the NHS organisation.
Discussion
This study explored the experiences of parents from minority ethnic groups participating in healthcare research, specifically focusing on the barriers and facilitators to participation. Initially, 29 parents were recruited through a variety of strategies, with 16 participating in the study interviews. The information generated provides useful insight into barriers to and facilitators for research participation by this group. This study is unique in that it explored research participation of parents from minority ethnic groups, including fathers, where previous studies to date have mainly focused on mothers.
Recruitment
Most participants were recruited through healthcare professionals (midwives, medical registrars and consultants) directly speaking to potential participants at the hospital antenatal clinics, parent education classes and waiting areas. Although this yielded high numbers of parents interested in the study, the success rate was higher where this was done by members of the research team.
There could be a number of reasons for this. It is possible that when parents were recruited through professionals during routine antenatal contacts, they felt obligated to agree. Previous studies have reported pregnant women and mothers from minority populations having difficulty in directly expressing reservations about research participation, potentially driven by cultural traditions and language barriers (McLean and Campbell, 2003).
When recruitment was done by members of the research team, it is possible that they may have been more enthusiastic and knowledgeable about the study, contributing to a better recruitment outcome. Having consistent, personable and enthusiastic study staff has been reported to help both in recruitment and retention (Marmor et al, 1991; Yancey et al, 2006; Zielinski et al, 2010). The research team members were also senior practitioners, with vast experience and expertise in the field (one was a senior nurse, one a senior midwife, and one a senior nurse/health visitor with a background in midwifery). When recruiting parents, they introduced themselves and struck up a conversation with potential participants before discussing the study, which may have helped engagement and willingness to participate. Studies where recruitment approaches were carried out in a respectful and caring manner based on socioemotional exchanges rather than purely informal consent have been reported to be more successful (Baker et al, 2005; Kenyon et al, 2006; Matsuda et al, 2017).
While a number of fathers initially agreed to take part, only two participated in the interview. Reasons given for non-participation mainly related to work commitments and lack of time. Fathers have historically been under-represented in health research (Davison et al, 2017). According to a US study involving 303 fathers from diverse backgrounds, when fathers were asked why they were less likely than mothers to participate in child health research, over 80% said it was because they weren't invited to (Davison et al, 2017). ‘Not being asked to participate’ was also a reason given by African-American men for not participating in health research (Hatchett et al, 2000). Fathers in the present study were recruited through their partners during routine antenatal and postnatal contacts. In many cases, women attended these appointments without their partner, meaning opportunities to recruit fathers directly were limited.
Recruitment was the single most challenging aspect of this study, which supports findings from previous research on women from minority ethnic groups and fathers in general (Mason et al 2003; Phares et al, 2005; Feskens et al, 2006; Davison et al, 2017). It is crucial for researchers to be innovative and culturally sensitive in recruiting efforts while avoiding undue pressure to engage parents (Cartagena et al, 2020). Research participation and recruitment may be facilitated by building a personal rapport with study participants and customising the recruitment strategy for each parent (van Delft et al, 2013). Using a direct approach for recruiting fathers could be helpful, where fathers are explicitly invited to participate, and targeting more father-focused venues needs to be considered (Baldwin, 2020).
Participants
There was a good age range of participants between 25 and 44 years old, as well as a combination of parents at different points in pregnancy and new parents with children of various ages. The majority of parents (75%) described their ethnic backgrounds as part of the Asian groups (Indian=69%, Sri Lankan=6%), followed by 25% from the Black groups (Black African=13%, Black Caribbean=6%, Black British=6%). These figures align well with the populations served by the research site where the Asian group (Indian in particular) is the highest-ranking minority ethnic group, followed by the Black ethnic groups (Office for National Statistics, 2021).
Motivation to participate
The majority of parents who participated had no prior experience of research and were not aware of any other healthcare studies. Their motivation for participation was driven by their ability to relate to the study and their desire to contribute to making healthcare research more inclusive of parents from minority ethnic groups. Altruistic drive and wanting to help other parents and babies in similar situations have previously been cited as motivating factors for men and women's participation in research involving the perinatal period (Kenyon et al, 2006; Gatny and Axinn, 2012; Baldwin et al, 2021). The participants were motivated to engage not only because of their ethnic background, where they thought they could add significantly to the existing body of knowledge, but also because of their experience as parents.
Understanding what motivates research participation can help researchers develop strategies to increase and maintain participant engagement. For example, verbal feedback can positively influence intrinsic motivation, and higher intrinsic motivation results in higher levels of engagement (Vallerand and Reid, 1988). To encourage parents from minority ethnic groups to take part in future research, verbal feedback could be incorporated at every stage of the research process, and especially in the dissemination strategy of the study findings (NHS England, 2023).
Language, culture and access
Language, access and trust have previously been reported as the three main reasons for under-representation of diverse participants in research (NHS England, 2023). Similarly, in the present study, while none of the participants required an interpreter, all stated language was a potential barrier to engaging parents from minority ethnic groups. Educational background and level of understanding of research in general and the topic being researched were also key factors in parents' willingness and ability to participate.
Access to research included access to the study information, technologies and the physical study sites. The competing demands of work commitments and parenthood were a challenge to participation for many parents. Accessibility, location and timing of research activities and interviews need to be considered carefully (Waheed et al, 2015). Being flexible with timings and giving parents a choice of locations for research interviews are likely to address some of these barriers. Remote working and the use of video conferencing is now common practice for many parents. As indicated by the parents in the present study, providing research interviews using video platforms may make participation more convenient for busy parents, increasing the likelihood of engagement.
The participants reported that some cultures did not understand or acknowledge the significance of research, and taking part in research projects was feared to bring shame on the family. Some talked about needing to obtain permission from a family member before being able to participate. This is not uncommon in certain minority ethnic cultures and similar reports of family members acting as ‘gatekeepers’ have previously been reported in studies from the UK and USA of Arab and South Asian women (Aroian et al, 2006; Neelotpol et al, 2016).
There was a strong sense of needing to maintain privacy and not share personal information with those outside of their home/family environment. This lack of trust negatively impacted parents' willingness to participate in research. Distrust was largely restricted to fears around confidentiality and data safety, which was also reported in a systematic review of factors influencing minority ethnic women's participation in maternity research (Lovell et al, 2023).
One participant, who identified as Black British, expressed the belief that participating in research meant becoming a test animal. Similar findings around deep mistrust were reported by Garg et al (2017), where the concept of research participation was associated with being a ‘guinea pig’, particularly for Black British women.
One participant expressed the desire to avoid attracting undue attention to herself by expressing personal opinions. She believed that being from a nation that was formerly governed by Britain had caused a power imbalance. According to other research on minority ethnic groups in Canada, participants' reluctance to divulge personal information may be influenced by their immigration status because of a lack of trust and a fear that the information may be misused against them by authorities (Ogilvie et al, 2008; Baiden and Evans, 2022). This may also apply to the UK context, but was not explicitly expressed by other study participants.
A lack of self-confidence and fear of ‘saying the wrong thing’ or ‘embarrassing’ themselves were mentioned as barriers to participating in research. Trust between the researcher and participant could be enhanced by openly addressing worries and providing clear explanations about how data will be used and kept private.
Facilitating research participation
Some participants suggested that offering compensation for their time would encourage involvement. Others felt that explaining the benefits and impact of a study was more important. Perceived desired benefit can act as a significant research participation incentive for women from diverse populations (Brown et al, 2000).
Participants highlighted the need for researchers to have a good understanding of cultural differences and the challenges that parents from minority ethnic groups face. They felt that having a researcher from the same background enabled understanding. All three researchers were from minority ethnic backgrounds, and during the study, they ensured that they were aware of and sensitive to culture-specific factors and religious practices, which were considered important for securing the confidence of participants (Neelotpol et al, 2016). The researchers' ethnic backgrounds may also explain the lower dropout rate for participants recruited directly by the research team, compared to those recruited by healthcare professionals.
To build trust and increase recruitment of participants from minority ethnic groups, studies have found that a personal strategy is necessary. This includes face-to-face recruitment by research staff who are participant-centred, culturally sensitive and from targeted minority populations (Garcia et al, 2017). The participants suggested that having a variety of recruitment and data collection methods would increase participation from minority ethnic groups. These included the use of videos, social media and questionnaires, taking a targeted approach, providing information about research processes and benefits and providing assurance around anonymity and confidentiality.
‘Word of mouth’ was thought to be a powerful mechanism for raising awareness of research studies. Using different forums to communicate relevant information was seen as an important step to increasing engagement. The participants suggested that dissemination of study information would have been preferred earlier in pregnancy and a range of healthcare professionals should be used to maximise reach.
Strengths and limitations
This is the first study to explore the experiences of mothers and fathers from minority ethnic groups participating in childbearing, child health and parenting research. It contributes to the evidence base and increases understanding of the barriers and facilitators to engaging parents from these groups in UK healthcare research. Having researchers from minority ethnic groups themselves was also a strength and perceived positively by the participants.
The participants were representative of the ethnic groups that made up the community where the research took place. However, it is acknowledged that the qualitative nature of the study and small sample size mean that findings may not be representative of the experiences and views of all parents from minority groups. The study also included only volunteer parents, which may have recruited those who were specifically interested in the topic area. The participants were from five different ethnic backgrounds and parents from other minority ethnic groups (such Pakistani, Bangladeshi, Chinese, Arab) and settings may have similar experiences, which were not captured in this study and would benefit from being explored in future studies. In addition, specific participant data, such as country of birth, religion, first language, education or income, were not collected.
Only two fathers participated in this study; therefore, their views may not be representative of all fathers from minority ethnic groups. The strict timeframe of the study meant that further efforts to recruit fathers were not possible. Data saturation was reached at 16 interviews, however the small number of fathers who participated meant that no barriers or facilitators specific to this group were identified.
Although the study was intended to include parents who did not speak English, and interpretation services were offered, none of the participants requested an interpreter. English was a second language for many of the participants and as the interviews were carried out in English, this may have impacted some participants' understanding of the interview questions. The researchers made every effort to repeat, rephrase and explain questions where necessary to avoid any misinterpretation or misunderstanding.
Implications for practice
This study provides valuable insights into the experiences of parents from under-represented groups in childbearing, child health and parenting research in London. Understanding the key motivating factors for participation can help researchers to use a more relatable and tailored approach to engaging parents. To develop culturally sensitive research strategies and processes, it is important for researchers to understand how different cultural beliefs and practices may impact childbearing and childrearing, as well as participation in research. Researchers need to ensure that parents from minority ethnic groups realise that their contributions are important, valued and crucial for improving services for other parents, children and families. By getting to know parents, providing reassurance and ensuring confidentiality around the research process, researchers are likely to build more trusting relationships with parents from minority ethnic groups.
Suggestions for encouraging research participation based on the findings include:
More research is needed to explore the experiences of fathers from ethnic minority groups during the perinatal period. A focus on father- and male-specific facilitators and barriers would be useful. Research involving a wider range of ethnic backgrounds would provide broader understanding of the challenges faced by parents from minority ethnic groups. It is important to acknowledge that challenges will differ between parents from different ethnic backgrounds. Research involving specific groups would be helpful in creating a better understanding of the unique barriers that may exist. Further research involving non-English speaking parents is also needed.
Conclusions
Researchers' relationships and communication skills play a major role in study recruitment and retention, often more so than the data presented in study materials. This study demonstrated the importance of developing rapport with potential participants, especially when working with mothers and fathers from minority ethnic backgrounds. Understanding these motivating factors to research participation is an essential step in developing recruitment strategies that are meaningful to parents from minority ethnic backgrounds. A clear understanding of research goals and perceived benefits, paired with maximising access to research studies, is likely to result in improved recruitment of parents from these groups. Researchers must carefully consider barriers and facilitators when developing childbearing, child health and parenting research, to ensure better representation of parents from minority ethnic groups.