Consider any specific groups you’re looking to involve and particularly those currently underrepresented in your area of research (e.g. specific mental health difficulty, ethnicity, community, region, age of child, diagnosis or on a pathway).

It’s worth thinking about different ways to get involved for parents and carers; it may help to ask the group you are trying to work with or connecting with community group leads who work with group to find out what works best.

We’ve heard from parents and carers how the opportunity to be involved across the full lifespan of the research, and being brought in at the early stages, has a significant impact in how engaged they are and makes opportunities more appealing.

It is key to connect with the people who understand communities and their experiences. Some parents and carers may have had previous negative experiences when sharing their lived experience in research or with other institutions (such as schools, healthcare), and so they may be unsure or have concerns about getting involved in research. There is also stigma in some communities around mental health.

Try to meet parents or carers where they are and find out how they might like to work with you.

Pilot recruitment adverts before publishing with smaller groups of parents or carers, and offer the opportunity to have a conversation with you about the study.

Build your knowledge of the group and any specific challenges or experiences they may have, so there is some common understanding and background from the start.

Consider presenting content in different ways (e.g. visually, reading it out, sharing information in advance etc) and offering multiple ways to engage with content (in discussion, through text etc) bearing in mind different communication styles, processing times, and caregiving responsibilities.

Offer an option to meet researchers or the team first, as well as before signing up to offer some assurance to participants.

Be aware of times that might be difficult for the group you are trying to work with (e.g. school drop-off times, school holidays) and offer multiple times in the morning or evening.

Aim to schedule engagement at least a month in advance and send reminders before meetings or workshops a few days before.

Share materials in advance, including any agendas, discussion questions or focus areas, and any necessary reading to give time for preparation and processing.

Provide flexibility or options for sharing more information or input after the event or engagement.

Offer adjustments where possible e.g. by offering materials in different formats (e.g. audio or visual versions), translation options, large text or braille if needed, different locations, adaptations to timings such as multiple sittings for a survey.

Use plain English – and where you have to use acronyms or specific terminology, explain it and include a glossary of terms (there’s a guide here and a tool to check readability here).

With research relating to mental health and involving the lived experience of parents or carers, you need to consider what support is in place. We know this can be hard, and it’s important you feel safe and supported as well.

Offer the option for parents and carers to speak with you in advance to introduce yourself and the activity, and address any questions or concerns they may have.

It’s not always easy to predict or know if someone will need support, so it’s good practice to make all parents or carers aware of support beforehand, share any trigger warnings, and be clear about what areas you are going to discuss.

If it’s likely you will discuss suicide, self-harm, or bereavement, it’s worth having additional support available (for example, offering a follow-up check-in, building in specific breaks or quiet spaces, or offering counselling or wellbeing support).

A short summary of your research or project, including who you are and what’s involved for parents and carers (see further detail below).

Include your research title, project aims, and a bit about you (the researcher) including your background and experience in the area of research and a link to your research profile.

Time: consider how long the opportunity itself will take (e.g. interview, meeting, survey), also include any preparation or follow-up time that is required e.g. reading an information document or reviewing a resource beforehand, or filling in a feedback survey afterwards.

Availability: be clear if you have fixed dates in mind, whether there are different date or timing options, or if parents and carers can select times.

Frequency: include the frequency and number of occasions you’re likely to be working together e.g. is this a one-off opportunity, a regular meeting you’d like them to attend, or are there ad hoc workshops for them to join over a certain period?

Participation: let parents and carers know how you are expecting them to work with you. Will they be part of a group discussion or sharing their experience in a one-to-one interview? Will they be feeding back on specific questions or broader areas, or will they need to provide written answers (short or long form)? Try to provide multiple formats for participation if you can e.g. written, verbal, video etc.

Parents and carers need to know what to expect to make an informed choice and engage fully with your research. We suggest you include these areas in your summary, and aim for no more than one page (challenge accepted?)

• Accessibility and inclusion: let parents and carers know how you plan to make the activity safe, inclusive and accessible.
• Logistics: share details about where you will be meeting e.g. online (which platform) or at a physical location, or if there is a choice, and how long the activity will take.
• Communication: let parents and carers know how they will receive information, how they can contact your or the team and whether they need to be able to reply to emails or speak on the phone.
• Timelines: explain when and what parents and carers can expect to hear from you, the timeframe for any opportunity, when you need any input from them, and any deadlines, closing dates or publication dates.
• Payment and Support: We share some guidance specifically about support and payment below.

It is important that the time, effort, and experiences of parents and carers are valued and so in general we expect that they are paid for their involvement in your opportunity.

Let them know what to expect from the start, including:

• the payment rate and how much they’ll get paid in total – don’t forget to factor in all time required including any preparation in advance or follow up tasks afterwards
• offering choices of how they can be paid (vouchers, bank transfers etc)
• when they should expect to receive payment
• any conditions or implications of payment e.g. to benefits, Universal Credit
• What other costs you can cover e.g. childcare, Wi-Fi, travel & subsistence costs (and if there are any limitations e.g. you will only cover travel up to a certain distance).

Please note, we do not accept opportunities that use prize draws as a payment method, given the importance of valuing all participants’ contributions.

If you are looking to run an activity which does not involve payment e.g. a short survey which may require less time and effort, please contact us to discuss this.

Aim to only collect the personal data you need, and treat this confidentially, securely, and in line with UK data protection legislation and any relevant policies or processes from the institutions involved in carrying out the research activity.

It’s essential to clearly let parents and carers know how their data will be used, who has access to it, where and how long it will be stored, and to discuss anonymity with them.