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Section 3 Issues and concerns in research and consultation

3.08 Making research and consultation as inclusive as possible

One of the ten key principles of quality in research and consultation is that it should be as inclusive as possible. Individuals and groups of service users who are often excluded from research are commonly referred to as ‘hard-to-reach’. This may be due to a variety of reasons, for example, their rural location, small number or because they have particular support needs or vulnerabilities. Hard to reach groups are often those that are the most socially excluded or disadvantaged.

Some more vulnerable service users may live in supported housing and whilst not ‘hard-to-find’, they may be unable to participate as easily in some research and consultation exercises unless specific attention is paid to their needs. Many of those living in general needs housing also have support needs of various kinds to allow them to give their views on services.

Practice Point

• Good practice in inclusion in research and consultation for excluded and hard to reach groups will promote the inclusion of all service users in research and consultation.

What excludes people from research and consultation?

Although there are several groups and communities that are frequently regarded as ‘hard-to-reach’ it is important to remember that not all groups are hard-to-reach in all circumstances. It is the focus of the research and the characteristics of the group that determine whether a group may be ‘hard-to-reach’.

At an individual level, people are often excluded from research and consultation because of communication difficulties, language, ability to read, mental or physical health difficulties and so on. However, a common misconception in research is the view that problems encountered when researching hard-to-reach groups are problems inherent to the group. On the contrary, typically, the problem is with the research design and with the relevance of the research to those being researched. In fact, it may well be the service providers that are hard-to-reach. This is related to research fatigue and is relevant to researching all groups.

To make research as inclusive as possible and to avoid research fatigue a utilisation-focused approach should be adopted to guide the planning and implementation of all stages of the research process.

A strategic approach to inclusion

As well as a UFR approach, specific attention needs to be paid to promoting inclusion through action at two levels:

• at a strategic level across social housing organisations to make sure that there is knowledge of different communities of interest amongst service users that may be excluded or hard to reach; and

• at a practical or operational level in the way that particular tools and techniques are adapted to enable the fullest participation in research and consultation.

Strategic level action

Social landlords may need to adopt innovative strategies and provide ways for service users to easily reach the research and consultation to ensure that there are no barriers to access and participation. It will be important to:

• know about and use existing networks and individuals;

• use publicity, events and campaigns to raise awareness of your services and the value placed on service user feedback;

• actively create new networks and develop contact with national umbrella organisations that work with the key groups.

Fuller guidance on promoting fuller public engagement and reaching hard-to-reach groups is available in the Scottish Parliament Participation Handbook (see references (20)).

Employing staff who are from the communities that providers serve increases confidence and trust amongst service users and helps improve awareness and understanding amongst other staff. There should be linkages between the organisational equal opportunities or diversity strategy and the framework for service user research and consultation. Staff from all levels can be engaged in service users’ research and consultation. This facilitates a greater organisational understanding of research issues and promotes research awareness amongst staff at all levels.

Operational level action

As well as an organisational approach to making research and consultation as accessible as possible, there are also a number of ways in which the choice of method and the way that it is implemented can affect participation.

It may sometimes be more effective to undertake specific research and consultation with excluded groups rather than to ‘hope-and-trust’ that research across a general population will capture sufficient numbers and details about a particular hard-to-reach population.

Ethical conduct is a particular concern amongst more vulnerable service users. Particular reassurance will need to be given to some service users about their participation in the research and the research design may need to allow and encourage people to have a friend, support worker or advocate with them. It may be necessary to make specific appointment times to conduct interviews with vulnerable groups, particularly if the research includes other parties such as advocates, support workers or interpreters.

It may be helpful to make opportunities for researchers to meet carers, staff and residents beforehand to explain the purpose of the research and consultation and provide a clear statement in an accessible form about the purpose of the exercise, how it will be conducted and by whom. It will also be particularly important to give a clear explanation of the confidentiality and ethical protocols being used and use simple, written consent forms. Informed consent is a particular issue and care must be taken that consent is given by the service users themselves, preferably through written consent forms, and not by others on their behalf.

Researchers need to be aware of and sensitive to the different needs and vulnerabilities of those they are researching. There are some useful lessons in the examples from Dundee, Angus and Perth and Kinross. Whilst it may not be possible to anticipate the variety and extent of needs in advance, some knowledge of the service user group should alert organisations to likely needs and decisions can then be made about the circumstances in which additional support will be provided. For example, it is often particularly important that safe, confidential settings are provided to enable vulnerable groups and those with care and support needs to openly give their views and express their dissatisfaction with services.

It will also be important to make provision for appropriate responses to queries or concerns raised by service users during the research and consultation process.

It is important to be as flexible and as open as possible to using whatever tools and techniques will best gather the information that you require.

Choices about research methods and strategies should be determined by the research context, the characteristics of the group and by the focus of the research. One size does not fit all and it may be necessary to develop different research approaches for different hard-to-reach groups. See the section on choosing an appropriate method.

For some research exercises it may be appropriate and valuable to ask service users about their preferred way to provide information and to offer them the option of an alternative research method or a choice between several methods. For example, with group-based approaches it may be necessary to consider decisions about the composition of the group; members’ shared history and proximity in supported accommodation may affect the dynamics of discussion and the quality of the data. The option of an individual interview could be offered.

It may also be important to be prepared to meet preferences about the gender, ethnicity, age and familiarity of an interviewer or focus group moderator. For example, the nature of the research topic or the composition of the group may mean that group members may feel distressed if researchers are too different from themselves. In this respect, it can be helpful to use researchers from the ‘hard-to-reach’ group, either members of the community or professional researchers with the experience and knowledge of those communities or skilled in overcoming communication difficulties.

Whichever method is chosen, it is important to avoid specialised language and jargon or complex instructions that might prevent service users from participating in the research.

Practice Point

• For each research exercise it is necessary to take particular care and proceed with sensitivity to the context and likely difficulties that people may face; this informs the research method adopted.

Some conventional research methods, such as satisfaction surveys, may not be appropriate for consulting with excluded groups and individuals. For example, using a very structured questionnaire may be inappropriate with some groups who may have difficulty concentrating or have a preference to tell their stories in their own way. However, in some circumstances it may be that only by using a very structured approach will it be possible for people to give their responses. This is a question of knowing the needs of the group and exercising judgement.

Where groups are small in number, quantitative methods may not yield a sample of sufficient size to gain an understanding of the points-of-view of the population being consulted.

Qualitative techniques, such as in-depth interviews, can often be more accessible and can promote a more relaxed atmosphere as well as enabling more detailed data to be gathered. Participatory methods may also be more suitable. Involving community members as advisors and researchers at some or all stages of the research can be particularly beneficial for research with hard-to-reach groups because:

• community-member researchers are familiar with the setting and are more likely to gain access to others than are external researchers;

• members of community groups may feel more comfortable and confident with someone who is familiar to them;

• community members’ knowledge of their communities enables them to advise on local needs and ‘what works best’ thus facilitating appropriate research design, implementation and dissemination.

Both qualitative and quantitative methods can be adapted into more visual forms such as Participatory Appraisal that do not rely so heavily on written text. Researchers may need to exercise some creativity in their adaptations but even slight adjustments can make the approach more inclusive.

As with all research and consultation exercises, it is important that service users are informed about how their views have been used to improve services. It is essential that feedback is provided through mechanisms appropriate for the group.

Some of these measures necessary to promote maximum inclusion may bring additional costs; whether it is necessary or feasible to adopt them at all times will require a local decision dependent on the purpose of the exercise, degree of vulnerability of service users and available resources.

Further information and guidance exists elsewhere. For example, the Mental Health Research Network has produced good practice guidance on service user involvement in mental health research. This is likely to be relevant for a wide range of research and consultation exercises ranging from user-led research through to the involvement of a range of vulnerable service users. The Scottish Association of Black Researchers aims to enable a positive and non-exploitative researching of race, in a way that is inclusive, participatory and empowering and may be able to advise on detailed matters. It has also published an ethical code for researching race, racism and anti-racism in Scotland.

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