The following paragraphs offer guidance on what to do when real life seems too untidy to fit neatly into the Inclusion Web chart.
What if the person doesn’t understand?
If the person finds a particular question difficult to answer or does not understand, then the supporter should adapt the question as appropriate to try and draw out the information. Substantial changes to the question should be noted, as the same question that was used at Time 1 should be repeated at Time 2.
Do staff / supporters count?
Organisations and teams using the Inclusion Web will need to decide whether the person supporting the participant and the location in which the session is conducted should be counted or excluded in the ‘services’ section. A rule of thumb is that where this person is either a researcher or has a clear role that is confined to supporting the person to build community connections, then they should be excluded. The important thing is that the decision needs to be consistent over time.
What about going out with a group of people using services?
Where a group of people who use health or social care services attend a community activity together, it is important to tease out whether any relationships have formed with other participants in that setting. If not, then the venue for the community activity will be placed in the relevant life domain, but the people are entered in the ‘services’ domain.
What counts as a ‘usual’ activity?
Care is needed when asking about what happens ‘normally’ in the person’s life. The phrase ‘would normally be involved’ has two levels of meaning. For example: it might mean that I view myself as a bricklayer and my normal life involves going to work, but for many years now I have been in an abnormal situation and haven’t been working. Or, it might mean that in the past few months I have been doing a part time admin job on Tuesday afternoons, but was on holiday last week.
The Inclusion Web aims to capture information about how people are actually living at Time 1 to compare this with Time 2. Therefore we would exclude the ancient bricklaying past (unless it impinged on Time 1 by, for example, meeting an ex brickie colleague for a drink last week), but include the admin job, despite the fact that the Inclusion Web was done on the holiday week.
Of course, the discussion might elicit all sorts of interesting material on self-image, history, aspirations and so on, that is valuable in the process of getting to know the person and helping them to target activities to increase their inclusion, even if it doesn’t appear in the Inclusion Web scoring form.
Sometimes the person will have contact with people or places that s/he cannot name. For example, frequent long conversations can take place between neighbours who do not know each other’s name. A nickname or brief description of the person or relationship with them may be used.
Where the respondent mentions a place or a person in relation to more than one life domain, that place or person should be counted in only one place on the Inclusion Web itself. The participant should choose where to count the person, and if they need help, may be advised to place the person in the life domain where the connection began. The space around the Inclusion Web can be used to record the multiple ways in which this social contact is played out. While this neglects some of the subtleties and multiple contexts where relationships are lived out, it also avoids the hazard of double counting.
Sometimes the person appears to have an unusual perception of which people to include on the Inclusion Web – perhaps God, a pet, a dead person or a robot. This should be noted on the form, so that the Time 2 review can start from the same baseline and detect real changes. Remember that it is the difference between the Time 1 and Time 2 Inclusion Webs that is important for the statistics. Sometimes people want to tell you about leisure activities that are solitary, such as reading or watching TV alone. These do not directly add to the person’s inclusive life of relationships with the wider community, but can give valuable clues about where the person’s passions lie that could be the starting point for an included life.
Issues for the second Web
There is potential to spoil the findings by reclassifying an activity between Time 1 and Time 2. For example, a badminton session at the local college might appear as ‘Sports and Exercise’ on the first Inclusion Web and be reclassified as ‘Learning’ on the second., even though nothing had changed. This measure relies on sufficient details being captured at Time 1, enough time and care being spent on reviewing changes at Time 2 and the integrity and rigour of people who are supporting the participants in seeking to minimise such distortions.
If discussions at Time 2 reveal some information about what was happening at Time 1 that was not recorded at the time, it is acceptable to change the original record. For example, the person supporting might ask, “You put your neighbours down this time – were you friends with them last time we met, but forgot to say?” Where there are significant changes between Inclusion Webs there should be explanatory notes in the margin of Time 2 in order to provide an accurate and comprehensible picture.