The challenge

Young Epilepsy is a national charity for children and young people aged 5 to 25 with epilepsy and other neurological conditions.

Epilepsy can magnify some of the problems associated with adolescence and can affect an adolescent’s independence, self-esteem and sense of identity.

Adolescents with epilepsy are often caught between paediatric and adult medical disciplines, with neither service specifically addressing their needs.

Young people and their families have informed Young Epilepsy that they face a ‘cliff edge’ where services fall away when the young person reaches the age of 16 or leaves school.

Young Epilepsy is working towards the development of a model for transition clinics that can be adopted on a nationwide basis. DJS Research was commissioned to seek the views of stakeholders to inform the development of the model.

The approach

We believe it’s our duty to deliver inclusive and accessible solutions which recognise the value and importance of all audiences, and all voices. Although some groups may be considered hard to reach based on personal circumstances, this can be due, in part, to limited sampling and poorly chosen methodologies which exclude and underserve these cohorts. At DJS Research, we focus on audience needs from the outset to deliver fully representative research. Our approach ensures no group is ever truly out of reach.

The combined expertise of our in-house Field & Recruitment team and our highly experienced researchers means we have both the resource and the skills to identify and engage vital groups which can otherwise be under-represented or – worse still – overlooked. We connect with the audiences you wish to better understand and work with them to generate the authentic insight, and customer clarity, you seek.

Through our time spent with individuals who are facing challenging circumstances and extreme hardship, we understand how complex and multilayered personal struggles can be. For example, individuals who are digitally disengaged may be more socially isolated, while others who are experiencing financial difficulties may be struggling with physical or mental health problems. We recognise that vulnerabilities come in many different forms and audience needs can be multifaceted.

Engaging these audiences requires sensitivity, careful handling and bespoke planning – there’s never a one-size-fits-all approach…

How we engage the audiences you struggle to reach

By placing audiences at the centre of our projects from the start, we ensure their needs, and the needs of our clients, are met throughout the research process.

Our tailored end-to-end solutions reach, and build trust with, under-represented audiences using the following principles and practices:

• Putting participants first: Recognising the needs of the individual based on their personal circumstances, ensuring they are handled sensitively and with the utmost respect.
• Agile recruitment: Using a blend of different approaches to engage groups who are deemed hard to reach. This includes our in-house online panel of consumers who are living with vulnerabilities, or facing personal adversities: Different Perspectives.
• Community links: Building authentic face-to-face links with community organisations to reach specific demographic and cultural groups through trusted people-led channels. Examples include specific ethnic minority groups, audiences with limited or no digital access and non-mobile users.
• Skilled interviewers: All our respondent-facing staff have been trained to conduct interviews with people in vulnerable circumstances. We have experience discussing the most sensitive topics with individuals who are facing the most difficult personal situations. These include patients (both adults and children) with life-limiting illnesses and their families, and people living in severe financial hardship.
• Protection and support: Our 'red flag' system means we can alert clients, or other appropriate organisations, immediately if we feel a respondent needs urgent help or might be at risk.
• Accessibility: We believe accessibility should be the rule for market research practices and not the exception. We design research that caters to the needs of our audience to maximise participation and ensure all respondents feel seen and understood.
• Working with organisations: We collaborate closely with associations who represent people in vulnerable circumstances, including charitable organisations, to optimise our understanding of these groups which further informs our approach.

With the right approach that puts participant needs at the heart of your research, no audience should be truly hard to reach.

Read more about our commitment to ensuring inclusivity and accessibility in all our market research projects.

And to find out how we can engage the specific groups you wish to hear from, and deliver the clarity and insight you need, contact our team today.

The results

The report identified the main issues faced by young people who have epilepsy and their families, issues related to making the move from paediatric care to adult care, and several of the key stresses of adolescence for those living with epilepsy. The vast majority of respondents (90%) felt there was a definite need for the clinics, and all respondents felt they would be beneficial.

The main benefits identified included helping adolescents to take charge of medication, providing a visible link between paediatric and adult care, and providing information. The research also provided Young Epilepsy with several points of best practice and numerous individual case studies.