Topics of interest to parents
Although the ROLO study focuses on both mothers and children, from the PPI meetings it was evident that parents had greater concern for outcomes relating to their children’s health, rather than their own. Interest focused on topics that could influence the health of the children both now and later in life. These topics ranged from potential predictors of health risks, dietary habits and information, contributing factors to health and study outcomes.
One of the areas discussed was the issue of child fussy eating at home and how it affected mealtimes. Parents felt that this was an area which should be investigated and one which they would be very interested in. It was also suggested that looking at differences between siblings in terms of food preferences could be beneficial. Research indicates that almost half of parents report that their child is a fussy eater at some stage in their first 6 years of life . It was interesting that this PPI meeting reflected concerns among parents in the wider population. A recent study reported that 53.9% of parents had concerns about child fussy eating but listed lack of time and tantrums as barriers to address these concerns . In previous parent focus groups conducted in studies of this nature, parental concern regarding their child’s eating habits is usually the dominant topic of the discussion and the general opinion is that a fussy eater can make meal-times more stressful. Additionally, there are concerns that fussy eating in childhood could affect them in the future, potentially due to reduced food choice and preferences or the belief that they may be lacking nutrients . There was a particular interest in the area of wellbeing and behaviour, especially the societal influence of social media and conforming to “norms”. On this topic, it was felt that asking children taking part in the pre-teen phase of the study to fill out a survey to gauge their opinions would be interesting and “could be a real eye opener”.
Another recurring topic was the area of body image and mental health. It was felt that body image also influenced the high drop-out rates from sport seen among teenage girls  and that there needs to be a system in place to support girls and encourage them to continue in sport. It was suggested to link body image, social media, and sports participation, to examine childrens’ opinions on these topics in the next phase of the study. Mental health in childhood is a huge issue in today’s society  and it was thought that examining this topic could provide scope as to how mental health in children and teenagers is affected and what could be done to help this problem. It was consistently highlighted that children and teenagers should know what was healthy and what could be done to support health – nutritionally, physically and mentally. Parent committee members also felt it would be interesting to see if there was a relationship between a woman’s diet and mood during pregnancy and her mental health 10 years on.
There was a discussion about micronutrient supplements amongst parents and researchers. Parents also voiced their concerns about the lack of clarity surrounding the need for supplements, vitamin D in particular. They highlighted the need for more information on supplementation for the general public as they felt it was quite ambiguous, and for medical professionals to also be aware of supplementation uses and needs.
Healthy eating policies in schools were also discussed as parents remarked how peers can have a strong influence on the foods that a child will choose to consume. While it was acknowledged that initiatives such as ‘Food Dudes’  made fruit and vegetables more acceptable in school lunches, it was accepted that often school lunches cannot be policed by teachers to ensure they are healthy. However, as teachers have such an influence on children, it is vital that they enforce healthy messages and are important sources of information for children. It is, of course, imperative that these messages are correct and evidence based. Following on from this, there was a suggestion to look at the influence of school on eating behaviours. Parents would also like to see a food pyramid aimed specifically at children and younger teenagers which focuses on colour and encourages children to make their own healthy food choices.
The fact that parents were positive about the use of a blood test in childhood to predict health outcomes should be considered by researchers for future studies as parents viewed it as relevant. It is also of note that parents recognised the importance of blood tests in determining health status and understood that this method was more useful that other methods of determining health status.
We predict that the identification of these themes will lead to an increase in the relevance of research outcomes. Researchers can focus their work on areas which will be of most interest to parents of children of all ages and which may not have been studied before. For instance, fussy eating in childhood was pinpointed as a topic which concerned parents and subsequently a grant was secured to facilitate research in this area.
Role and benefits of PPI
From the point of view of a researcher, the methods of PPI which were incorporated into the ROLO Study (increased contact and feedback, surveys, establishment of a committee, participant contributions to manuscripts, conferences and grant proposals) have suited this study and have provided a platform for participants to increase their involvement in research and improves the relevance of the ROLO Study. When analysing the attendance at meetings, it appears it may be necessary to conduct meetings at other stages during to year to further increase participant involvement. This may involve facilitating meetings at weekends or in the evenings or may involve the use of video technology to allow participants to “dial in” if they are not in a position to attend in person.
PPI can greatly enrich research and be of benefit to both participants and researchers. PPI has had very positive feedback from other studies reporting that participants gained new knowledge and skills while growing self-confidence . At the ROLO Family Advisory Committee parent members reported feeling that they were obtaining useful information about their children while also being able to contribute to research. They were in favour of children being involved in meetings and also having a say into what research was conducted. The parents agreed that the older sibling could also be involved in ROLO research going forward, emphasising the importance of a family approach for studies of this nature. This highlights the positive influence PPI can have on parents and their attitudes towards research. The use of PPI for the ROLO study is important as the study changes as the children get older so study ideas and methods must be tailored to best suit the study participants. With the involvement of the parents the direction of the research and the agenda can be altered ultimately leading to much stronger and relevant research being conducted. Other studies which have involved the public or participants have also reported that this collaboration assisted in making reports more hard-hitting, accessible, and useful to the target audience . Specifically, for the research team, PPI has many benefits in terms of developing and improving understanding of a condition or concerns of the participants . In addition to assisting research by identifying areas of importance, PPI encourages involvement in subsequent research . Undoubtedly PPI can be hugely valuable at every stage of the research process by helping to ensure that funding is appropriately prioritised, that research evidence is relevant to participants, by improving recruitment and retention rates, and supporting the uptake of research in practice .
At the meeting the future direction of the ROLO study was discussed and it was suggested that a children advisory committee could be set up with just the children and the research team present to obtain information solely from the child’s perspective. We are currently in the process of identifying the most effective way of interacting with the child participants and what topics we feel would be of benefit to discuss with them. A topic which was suggested to focus on for the teenage follow-up stage was sources of information on nutrition and exercise. It was also suggested to investigate an app for teenagers which they could use to obtain activity-specific food ideas and recipes to help them better understand nutrition and assist them in following a healthy lifestyle. This app would provide teenagers with reliable nutritional information and deter them from looking for nutritional advice on social media. Research into the area of sexual health was also encouraged as the children involved in the ROLO Study are approaching puberty but there was little further discussion around this topic. In terms of future research, examining relationships between a mother and child’s blood markers of health was better received by the parents than looking at the relationship between measures such as blood pressure levels. Yet parents also felt that if these relationships are beneficial for clinicians to examine then they should be looked at. Sleep patterns in children was supported as an important topic to look at and it was emphasised again the potential benefit of including other siblings from these families for comparisons.
We are constantly looking to increase to number of members on the ROLO Family Advisory Committee and will continue to do so by interacting with all participants regularly and informing them about the role and benefits of the committee. This paper focuses on families’ thoughts and opinions and is not an in-depth analysis of their experience. Hence, in the future we aim to conduct a further piece of research to explore the ROLO participants’ experiences of being involved in research.
Strengths and limitations
All parent members in the ROLO Advisory Committee are a self-selected group that participate in the ROLO Study and assist in improving the strength of research being conducted. Meetings were recorded and transcribed in order to ensure all topics of interest were correctly identified and all participants had sufficient time to express opinions and views in a relaxed environment. As there was a small group of parents in attendance at the meetings, it has to be considered that their opinions may not necessarily represent all of the parents involved in the ROLO study. Meetings were held during the week which may have been difficult for parents who are working or those with young children to attend. It is vital to consider hard to reach groups when encouraging attendance at these meetings. In order to reach as many groups as possible, all channels of communication were utilised. These included social media platforms (Facebook), email, letters, phone calls and text messages. An email of invitation to join the ROLO Family Advisory Committee is sent to all participants prior to any meetings of the committee highlighting the benefits of PPI and the role of the committee. This allows for the consistent growth of the committee and encourages those who may not have been interested at the time to consider becoming part of the committee. Regular reminders about meetings are also sent via email and text message.