Autumn 1995
Micheline Caldwell, Community Services Officer, John Calder, Information Officer, Dr Stuart Aitken, Principal Officer (Research and Practice) and Sally Millar, Research Communication Therapist, came together on a project funded by the Scottish Office Education Department to investigate a new method of recording information about deafblind children and adults.
All parents of deafblind children and young people will have experience of spending countless hours responding to a range of professionals asking a barrage of questions about their children. The speech and language professional has one list (or several lists) of questions; the educational psychologist another list, and so on. Not only can it be a frustrating experience for you to have to repeat yourselves to numerous professionals, but sometimes the questions posed are not framed correctly. Because of this, your answers might not turn out to mean quite what you thought they did.
Other more subtle effects are likely to occur when you constantly have to provide information about your child. You have no control over the order of questions being asked, and the final layout of the answers is also out of yur control. Perhaps most important of all, if you, the parent, read the final version of information collected, you may find it difficult to recognise your own child - hidden beneath strange phrases and professional jargon.
If there any way around this? After all, practitioners do need to obtain information in order to ensure that clients can participate in activities like going on holiday, at minimum risk to themselves with the maximum chance of having a happy time. Can information about deafblind children and adults be presented in a way that is sufficiently informative, but at the same time jargon free, and presented in a personalised and interesting way? Sense Scotland embarked on a project to find out if using Personal Passports could solve the problem by drawing together information about children and adults, and presenting the information in such a way as to be accessible to all - friends, relatives, carers and practitioners included.
The concept of using Personal Passports was introduced by Sally Millar, a communication therapist based at the CALL Centre in the University of Edinburgh.
It is interesting to note that others have had similar ideas, including Gretel McEwen in Newcastle. Sally's first passport (then called a Personal Communication Handbook) was produced in 1991, with and for a person who was affected by a stroke. The passport was in the form of a booklet which described in a human way everything a carer needed to know about the person and, in particular, her unique style of communicating with others. Building on this work, Sally began to introduce the idea with a small number of children in schools. Sally presented on this topic at the Sense Scotland conference held in Dundee in 1993 and substantial interest was expressed by delegates. Sense Scotland approached Sally to discuss the possibility of conducting a passport project with deafblind children. The Scottish Office Education Department funded a small project which began in 1994.
Sense Scotland offers a number of services to deafblind children and adults, including short break holidays, short term respite, community houses and other services. We wanted to discover if passports would help us to provide these services by:-
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Reducing or eliminating redundant information and bringing information together from a variety of sources. Respite and holiday settings mean that staff work for short periods with clients but, because of their specialised needs, staff must be given sufficient information for them to get to know the client. This is vital in ensuring client safety, health and meeting of individual needs.
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Providing new staff (and volunteers accompanying holidays), with information in an accessible and concise form that can be rapidly assimilated.
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Providing training for staff that is highly client-specific.
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Explaining how to use specialised forms of communication (as many of our clients are not yet at the stage of acquiring or using more formal augmentative communication systems). The need to involve large numbers of volunteers makes it impossible for all staff to be trained across all possible techniques of communication.
In addition, we wanted to return as much control as possible to both the clients and their parents. We saw passports as one way of monitoring and maintaining quality across services, and of demystifying our work with clients. We also saw the chance to personalise information and make it appealing: using eye catching layouts; personal touches; humour and jokes; colloquial language; photographs (worth a thousand words) - so that people want to read it.
The group of clients participating in the initial project comprised:
a) Two children, familar to Sense Scotland staff, who intended to go on a holiday, for whom passports were completed;
b) Two children, new to Sense Scotland services, for whom passports were completed;
c) Four children, selected at random but who all received Sense Scotland services, for whom no passports were produced but existing client information sources were available;
d) Two young people, currently attending school but who will in future be in transition from school, perhaps to a community house, for whom passports were completed.
During the course of the project, the managers of four Sense Scotland community houses each expressed an interest in producing a passport for a client. They duly did so, though this group did not contribute to the analysis within the terms of the project.
Methods
A project team was set up, consisting of Key Workers (KW), Sense Project Moderator (SPM), Researcher and Desk Top Publishing (DTP) support. At first, the SPM and one KW worked on producing four passports. However, our early attempts were ill-conceived, badly laid out and resulted in us spending a few hours in detention. We all agreed to concentrate on producing one passport.
Results
Part of our analysis into the role of passports involved devising two evaluative questionnaires. The first was for completion by parents, the second for completion by practitioners. (1) The questionnaires set out to compare the usefulness of passports with Sense Scotland's existing methods of collating client information. Questions compared layout and accuracy of information; respect for the client; helpfulness to Sense Scotland staff and to other staff in getting to know clients; ease of use to both groups of staff; helpfulness in leading to good practice; effectiveness with family, friends and relatives, as well as a number of more open-ended questions.
Both parent and practitioners were invited to indicate their preference for either passports or the current information systems (i.e. client record files), point by point. We used a sliding scale with respondents being invited to score items in the questionnaire from 1 through 5. The higher the score the more positively that particular item was regarded by respondents. Parents whose children had (or might soon) be given passports showed a clear preference for passports, scoring an average of 5 out of 5 (120 out of a possible 120). In comparison, parents assigned client record files scored these at an average 3.375 (81 out of a possible 120). Across all participating groups, parents expressed a clear preference for passports over the traditional type of client record file.
The questionnaires also invited more open-ended answers. Parent comments in response to these parts of their questionnaire included:
for passports:
"I feel it makes it much more informal and friendly"
for traditional client record files:
"It makes me think that it is just a job for the staff and they are not really interested in the children."
while all respondents preferred passports for showing to others (friends, relatives etc.). One parent went on to state that passports
"... enable the carer to really get to know each individual child. I really welcome this new form".
A result which echoed the findings of Sally Millar, and which was specifically tested in this questionnaire, showed that parents preferred the passport to be written in the style of the first person (e.g. "I hate jelly so much I might even spit it back at you, so watch out."), whereas practitioners preferred it to be written in the style of the third person ("Fred has trouble eating soft, mushy food and tends to dislike it for this reason").
Practitioners, being familiar with current information systems, might have been expected to prefer those systems over passports. However, results for practitioners also indicated a preference for passports, although they were slightly less enthusiastic than parents.
Practitioner responses to the semi-structured section of the questionnaire included:
for passports:
"Could go with (XX) on holidays. Omits unhelpful information."
"It's short and to the point"
for current information systems:
"It's like starter info, to be kept on file as reference"
"Not enough information".
One of our most interesting findings related to the responses from the group of parents whose children had not received passports. These parents received an 'anonymous' passport (i.e. all personal and private information and photographs were omitted). The parents also received information that was specific to their own child, as held in our client records. This group could legitimately be seen as having no vested interest in seeing any positive advantages of passports over other information systems. Results still indicated a preference for the passport format. Indeed, one parent was able to recognise and identify the comparison 'anonymous child', despite prior removal of all key private information and photographs, and despite the family having met this child only occasionally.
Discussion
On the basis of our results, we intend to continue developing this method of providing information about clients to practitioners. Meanwhile the families who participated in the project will receive the final passport. It is for them to keep, and for their child to use. Unlike most other systems for collating information, passports are not the property of the agency which collects the information. Instead, they belong to the client and/or parents, and will be retained by them. On Sense Scotland respite holidays and other such activities, Sense will become the temporary keepers of the passport. A rolling programme will be established for updating passports. In plenty of time before the next holiday, parents will be contacted and invited to include comments to update their child's passport and produce a new booklet.
The passport project has influenced our practice in other ways. For instance, during the course of the project, it was agreed that each of our holidays would continue to run for eight days. But instead of holidaymakers starting on Day 1, that first day will be set aside for training volunteers. The training will focus on the passport, using it to describe and explain approaches to the client(s) for whom the volunteer is responsible. Of course, it will be some time before we produce passports for each Sense Scotland client. Meanwhile we will use holidays and other opportunities to continue our investigation into the advantages and disadvantages of this approach.
If anyone is interested in finding out more about this project, please contact any of the first three authors. For those who wish to discuss details of this research, contact either Stuart Aitken or Sally Millar.
