Part 2d - Involving people in group activities or as communities

Involving people in group activities or as communities

" Communities are diverse and local interests may conflict with each other. If the community is seen as homogenous then only the most powerful voices will be heard".43

Meetings

Can be for giving or gaining information, but usually a combination of the two. Although the following guidelines were to make meetings more accessible for people with learning difficulties they stand as a general rule and would help any service user (or director of services?) taking part in a meeting.

Guidelines for making meetings more accessible:44

Make meetings less formal
Build in breaks
Make sure the purpose of each meeting is clearly explained
Send out papers early enough for participants to study them
Prepare papers in accessible formats for example, large print, audiotape.
Avoid all jargon and abbreviations, and explain all items clearly
Provide a supporter for individual participants, to facilitate their contribution as needed
Provide briefing and debriefing opportunities. People may need time to plan and prepare what they want to say and consider what has happened.

See also 'Engaging with older people'

Committees and similar groups

Committees are a way of working within and between agencies. They are alien to many service users and members of the public. However, committee membership is widely used as a means of involving service users, often through representatives from user groups and voluntary organisations.

Good for:

Formal processes. Creative ones are better in small groups and workshops

Advantages:

Ongoing contact with service user representatives

Consider:

Participants can be perceived as becoming aligned with the agency
Agencies often expect user participants to act in a representative role. This may not be comfortable for them. They may have no mechanisms for representing the views of their peers
Accountability for decisions is often unclear

See 'Representativeness and accountability'

Making best use of committees:

Is this the most appropriate process for purpose? Consider less formal arrangements to involve service users. Professional rituals and jargon exclude people and may intimidate them

Service users need training and support to participate effectively in such a process - professionals have it, why put users at a disadvantage?

Make sure the group has a real purpose, with a jointly agreed remit, in writing, and regularly reviewed.

Involve wider interests through informal contacts and preparatory workshops

Support consultative processes within voluntary organisations through funding and admin support

Research found that people with mental health problems or disabilities felt that their presence on committees compelled others to consider their experiences, and that their views were taken seriously. However, they were not sure what influence their views had on policy.⁴⁵

It may be more appropriate to assemble groups to work on particular issues rather than have a single standing group. User-group-specific forums, local working groups or reference groups can offer a more informal way of working. For example,

The continence service in one Trust has established a group of service users and their families, consultants, GPs and other health professionals. The group meets quarterly to discuss and revise procedures and set and review outcomes.

Quality Action Groups⁴⁶

This is a process that most people could take part in. Change can be broken down into small achievable steps and the visible result helps to sustain the process. Success breeds confidence. It is suited to residential and day care settings, but has been used in home care.
Staff need to be open to change, and have the autonomy to put plans into action. They need to feel secure, so that they are not threatened by criticism, and understand power relationships so that they don't dominate and control the agenda. See Power

There are 6 steps:

Bring people with an interest together (service users, carers and professionals)

Agree what the service should be like

Compare with what is actually happening

Focus on something that can and should be improved

Agree on a plan and put it into action

Consider what has changed and what to do next

Juries

Citizens' Juries developed in Germany, and were first used here by the Institute for Public Policy Research. People are paid to attend over a 3 or 4 day period, participating as citizens acting in the interests of the whole community rather than in a personal or interest group capacity.

Between 12 and 16 people are selected at random to reflect the socio-economic profile of an area. The jury is provided with detailed information and can examine expert witnesses. There is time to consider and discuss the evidence before reaching a conclusion.
The jury approach could be used with specific groups of service users where there are choices to be made about the future direction of a service, or priorities to be decided upon.

Good for:

Involving the public in decisions that affect them - strategic planning and service prioritisation, considering controversial issues.

Advantages:

Seen as democratic - independent, lay views given weight, scrutiny of service provider
Deliberative process - develop a shared view
Complexity of decision making revealed

Consider:

Small numbers of people involved - the wider community may not be committed to decisions reached by the jury
Group dynamics (as with any group method) may influence decision
Jury may not reach a consensus
Expensive and time consuming to arrange

Studies of Citizens' Juries working with Health authorities by the IPPR and King's Fund have shown that participants can deal with complex issues and reach constructive conclusions.

Examples include

Lewisham asked a Citizens' Jury to consider how to approach the issue of drugs and young people.

Walsall Health Authority asked a jury to choose between four models of palliative care.

Deliberative Polls

These share features of panels/juries. People are given information before voting, but there is no attempt to reach a consensus view.

Focus group discussions

The 'true-type' focus group is a small group of ideally no more than 12 people given a particular topic or issue as the focus of discussion. Focus group discussions can allow participation of those who would only feel comfortable in a group of similar people. (For example, young people, women, rape victims).

Discussion groups can also be used to obtain views on a wider range of issues, although they will only work if there are a limited number of topics for the group to address in one session.
Group discussions can engage 'harder to reach' groups where other methods might fail to include them.

Good for:

In-depth exploration
Identifying issues and framing questions for a larger sample
Identifying issues which require consideration or work
Interpretation of unexpected quantitative findings

Advantages:

Non-literate people can participate
Those with a hearing impairment or for whom English is not a first language can participate with appropriate facilitation
Allows clarification and expansion of views
Characteristics that might influence the outcome e.g. age, sex, socio-economic status can be matched
Small size, skilled facilitator and appropriate support allow difficult or sensitive issues to be explored
May draw out people who don't find a one-to-one interview easy
Individuals' views may be crystallised by hearing them articulated by others.

Consider:

Requires skilled facilitators
Usually recorded, transcribed and analysed - time consuming
Group norm may mean the dissenting voice is not heard
Participants may be influenced by social pressure, embarrassment and so on
Vulnerable people may be revealing information in a forum where confidentiality cannot be guaranteed
Post-group support might be needed for some participants
Cost/benefit ratio for information from a small and limited group may be high

Research suggests that groups which mix lay people and professionals are not ideal and need clear ground rules. The user may be inhibited by the 'expert', and be inhibited from expressing their true feelings, while professionals may be defensive.⁴⁷

North Derbyshire Health Authority48 used street interviews to recruit people for discussion groups about health issues and views about local services.

They excluded health service staff and their relatives and those who had no experience of using health services in the previous 5 years. This approach failed to recruit young people aged 16-24 and older people aged 70 and over, so these groups were recruited through the local college and from pensioner groups. Participants were paid a Ł10 fee (1993) and childcare costs.

From this exercise the HA found that:

People were interested in and able to talk about health issues

Some were distressed by talking about personal experiences, and it was necessary to have more than one facilitator in order to deal with this

Participants wanted direct and honest answers about the purpose of the project and reassurance about confidentiality

People were interested in the outcome of the work and wanted feedback. Half of the participants of the groups discussing maternity services requested the final report

Some of the responses came as a surprise to the authority

Although running 11 groups was " a major undertaking" only around 100 people were involved

Ways in which all key interested parties come together to develop shared visions

Examples include Consensus Conferences, Future Search Conferences, Whole Systems Events.

Key features are:

Event facilitated, but no one participates in expert role
Structured process moving from past experience to envisioned 'ideal' future
Action groups formed to realise solutions proposed

These 'bring those with the power to make decisions together with those affected by decisions to try to agree on a plan of action.' The participants divide into smaller groups, moving from reviewing the past to developing a vision of an ideal future. Action plans are developed and groups commit themselves to action toward creating their vision. Sizeable numbers of participants from different backgrounds introduce a broad range of views.

Participatory Appraisal

"Participatory Appraisal is a family of approaches and methods used to enable people to present, share and analyse their knowledge of life and conditions, to allow them to plan and act".49

Participatory Appraisal is popular at the moment. It is a flexible 'family of approaches' so may look quite different in different circumstances.

PA is often used to seek the perspectives of a defined community or group. Community members may be trained to carry out the work .The community identifies its own strengths and weaknesses, priorities, issues of concern and solutions to problems or action that can be taken. Community members are participants in (rather than subjects of) research and 'own' the information collected.

A number of approaches are used in combination, including surveys, interviews and group discussions, using inclusive, visual means of communication such as mapping and network diagrams.

PA is also used to develop a community information base, from existing data, observation, and interviews with 'key informants' (professionals working in the area, key community figures and community members). Information is considered valid when it comes from at least three sources or collection methods.

A community information pyramid⁵⁰ Information gathered using Participatory Appraisal approaches feeds into policy and decision making (such as where to target resources).

Participatory appraisal can be used as a rapid data collection exercise to provide baseline information, or as a means of understanding how a group or a community view themselves and what their priorities are. It can be the first step in engaging with the community for ongoing community development work.

Good for:

Engaging with defined geographic or interest communities

Advantages:

Can be done quickly
Can be used by community staff to produce locality profiles
Can excite local interest and ownership
Can reach a wide group who might not usually participate
In depth insight into how a community sees itself, and its priorities

Consider:

As a one off data collection exercise, does not produce sustainable community development
May raise expectations, and a wide range of issues which the community/agency may not have the power to change
Needs the resources to support the exercise in a concentrated time period
Outcome can be skewed if only certain sections of the community participate

A review of five studies using the technique in a primary care context ⁵⁰found that

'Far from making huge and unreasonable demands, patients and community members made practical and achievable suggestions.'

As part of a review of health promotion activity and health inequalities a community appraisal was undertaken in each of the 21 most deprived electoral wards in Hull and the East Riding of Yorkshire.⁵¹Co-ordinators who lived or worked in the communities involved set out to build on the skills existing in the community to gain a community perspective on health. Each ward produced a report reflecting community responses to four questions:

What does being healthy mean to you?
What affects your health (good and bad)?
How has this community changed in the last five years, for better or worse?
What do you think local people could do to improve health in this community? What could others do to improve health in this community?

It is intended that the work will "create and enhance baseline information to inform how specialist resources are used, identify key issues for local project planning and highlight the range of information currently available" on local populations.

The methods used for the community appraisal will be evaluated, and it is anticipated that this will indicate how far the participatory appraisal approaches used contributed to community capacity development.

Health Promotion Hull & East Riding Community Health NHS Trust

Community Development

Definition United Nations 1948:

A movement to promote better living for the whole community with active participation and if possible on the initiative of the community, but if not forthcoming by techniques to stimulate it.

This may be a geographic or interest community. The community identifies its own needs and is supported to develop its own projects and support systems. The lay view is predominant.

Community development builds 'social capital' - social trust, social cohesion, social networks, strengthening of voluntary organisations, neighbourliness, civic identity and community involvement.⁵²

Community development underpins involvement of the wider range of people agencies say they would wish to engage with. It allows otherwise marginalised individuals and groups to develop the skills and confidence to represent their own needs, priorities and solutions, and to work actively and constructively with service providers and agencies. Support for community development work should therefore be part of any strategy for user involvement.

Good for:

Developing support mechanisms and skills within a community. Allowing individuals and communities to develop through work on their own solutions to the problems they identify.

Advantages:

Active ways of communicating views, concerns and priorities other than through verbal means, for example, through community arts schemes, can engage a wider range of people⁵³
Raises confidence and self esteem
New skills and knowledge developed
Participants enabled to take more control over their lives and environment

Consider:

Needs long term commitment
Specific outcomes can't be predicted

Crosby 21 is a local project designed to enable people in the Crosby district of Scunthorpe to take an active part in improving the social and economic life of their area. Residents, who include a minority ethnic population, are consulted through arts based activities, assisting them to identify and address issues that are important to them.