Accent has a long track record of research with vulnerable groups in the healthcare and utilities sectors. Understanding the needs of vulnerable groups is usually a first step towards adequate access to essential services for all. Research can also go further and actively engage vulnerable participants in problem-solving to address any challenge they may face.
The question remains: who is vulnerable? Vulnerability is usually defined in relation to a person’s susceptibility to harm or need for special care, support or protection. Someone who is vulnerable in one context may not be in another. Similarly, a degree of subjectivity is inevitable in deciding who is considered vulnerable. A good understanding of the targeted vulnerable groups and possible ambiguities in the definition of ‘vulnerability’ is therefore a pre-requisite for successful research with these groups.
When done right, research with vulnerable groups can be tremendously rewarding. Good-quality research can yield important, sometimes surprising, insights that would not have emerged from research designed for more general target populations.
Several factors are key to research with vulnerable groups:
- Understanding the diversity among the targeted vulnerable group(s) is important and this knowledge should feed into the research design and sampling strategy. Not only can vulnerable groups differ from general populations, they may also be different from one another. Knowledge of the targeted vulnerable groups is also essential for identifying relevant individuals for participant recruitment.
- Using language and research stimuli appropriate to the vulnerable group(s) is even more important than for other target populations. Participants could include those who have visual or hearing disabilities, literacy issues, or memory issues that might affect their ability to engage with any materials presented to them whilst participating in the research.
- For some vulnerable groups, it may be appropriate to actively involve a carer, or guardian in the case of minors, in the research. Carers could give valuable perspectives that either complement those of the main participant, or if research participation is not possible at all, provide the best possible alternative to interviewing the target group directly. Clear guidelines should be set in advance of fieldwork. Is it desirable for carers to be interviewed? Are carers and other people allowed to be present during an interview with a vulnerable participant? If so, can they take an active role in the interview and answer questions?
- Ethical implications of the research need to be given serious consideration from the start. Ethics are entrenched in the health and pharmaceutical research process, but for consumer research it is important to consider whether specific measures to ensure ethical treatment of vulnerable groups are needed in addition to the general guidelines around informed consent, participant confidentiality and the right to decline or withdraw.
- In particular, adhering to ethical guidelines is crucial if the research touches on potentially sensitive subject matters. Vulnerable participants need to understand they do not have to share information if they do not wish to do so. Informed consent may also require careful thought if the research subject is potentially sensitive.
- Informed consent and participant recruitment can also be complicated by people not identifying with being ‘vulnerable’. Only a small minority of individuals classified as ‘vulnerable’ are registered on Priority Service Registers (PSRs), which tend to rely on self-identification. Moreover, many individuals who meet the criteria do not know whether they are on any registers. Similarly, people who look after a partner or a close relative do not necessarily think of themselves as ‘carers’.
- And last but not least, creating an environment in which participants feel comfortable sharing their views is vital to the success of the research. This includes interviewing participants in an environment where they feel comfortable. For some participants this would mean being interviewed in their own home, others might prefer a quiet public space. Equally important, research staff should have the appropriate skills (e.g. through disability awareness training) and, where relevant, they should be provided with guidance (e.g. helpline numbers) should a vulnerable participant require support.
For more information on Accent’s research with vulnerable groups, please contact Siu Hing Lo via firstname.lastname@example.org