In recent years, information about diabetes has become much more readily available through the press and the Internet. Newspaper headlines and news items on such programmes as ‘Tomorrow’s World’, stating ‘Cure for diabetes,’ ‘Needle-free injections,’ ‘Islet cell transplants’ or ‘Pain-free blood testing’, raise the expectations of young people with diabetes and their parents, only for them to find that these developments are many years away or not applicable to young children.
For some young people, this can have a catastrophic effect on how they feel about their diabetes; and when they discover that the ‘cure’ is not available they lose faith in their carers and medical team.
Information overload
At diagnosis, many young people with diabetes and/or their parents seek information from the Internet. However, this can provide them with more facts than they are ready to cope with, leading to greater anxiety at this very stressful time. The information may be confusing – what families need to know is how diabetes will affect the child or young person now and in the future.
Although many have access to various diabetes-related websites and can obtain information on new developments, new products and problem solving, often they do not have sufficient knowledge to evaluate this information (Kelly et al, 2002).
As alternative methods of blood glucose monitoring and insulin administration become increasingly available, parents are eager to view and handle new equipment in order to find the most appropriate one for their child.
The combination of increasing numbers of young people diagnosed with diabetes and new developments in their care has put greater pressure on paediatric diabetes specialist nurses (PDSNs). Consequently, the opportunities for education and down- loading of test results from the latest blood glucose meters may be limited.
When these are achievable, they do offer an opportunity to engage young people in discussion and feedback about the care of their diabetes, thereby providing the PDSN with the chance to develop the knowledge of the child and/or family. The ability to negotiate individual targets for care should narrow the gap between ideal and real self-management targets (Doherty et al, 2000).
Existing service
The Diabetes Home Care (DHC) service based at Birmingham Children’s Hospital aims to meet the recommendations of the International Society for Paediatric and Adolescent Diabetes (ISPAD) Consensus Guidelines (2000), Audit Commission (2000) and the National Service Framework for Diabetes (Department of Health, 2001), by providing a 24-hour service 365 days a year, to support and educate the 390 children with diabetes in their care.
Children newly diagnosed with diabetes are managed entirely at home if they are fit and well on presentation. Support and education are provided in the home at injection times until the family is confident in the technique. The benefits of home support and how this can reduce readmission rates in the future are clearly described by Swift et al (1993).
Contact is maintained by telephone, to provide support and advice as necessary, and families are encouraged to use the 24-hour helpline if problems occur. Continuing support is provided in the home, with twice-yearly visits to discuss care and identify problems. The team also reviews the children with diabetes in the outpatient clinic three to four times a year.
Problems
Unfortunately, these contact periods are always busy and there is never enough time for staff to answer all the questions that the families may have. Also, some parents and young people are reluctant to ask questions at the clinic because, in their own words, ‘we can see the staff are busy’ or ‘we would be keeping other patients waiting’. In Raleigh and Clifford’s study (2002) some patients felt that they did not have enough time to discuss all their concerns with the nurse or doctor.
Although all this support is available to the families, there are frequently developments or news items that raise questions between routine contacts.
Before 1998, although the DHC office was accessible, the families of children with diabetes rarely used it as a drop-in facility; there were fewer than 100 visits a year to the department. In 1997 the hospital moved to a new site and the DHC office was relocated to a small self-contained area, with considerably more space.
Aims of the open access clinic
Following the move and because of the increasing workload, it was decided that the nursing team should provide a service with easy access for advice between routine contacts. The aim was to allow time for patients and/or parents to discuss diabetes management problem, and to obtain information on new equipment. The service would also allow time for downloading the test results from blood glucose meters and offer young people with diabetes and their families an opportunity to discuss queries about recent news items about diabetes.
The PDSNs routinely worked weekends and were regularly undertaking two home visits on Saturday mornings. It was decided that this time might be better utilised as an open access clinic for young people with diabetes and their parents – not to replace routine outpatient appointments or home visits, but to complement them.
Introduction of the drop-in clinic
The family of every child with diabetes was notified in writing that a nurse-led clinic, for which no appointment was necessary, would be available every Saturday morning between 09:30 and 12:30. The young people and their families were also told about the drop-in clinic when they attended their routine outpatient clinic.
The Saturday morning nurse-led drop-in clinic was introduced in the autumn of 1998.
Outcomes
Initially, the young patients and their parents were encouraged to attend the drop-in clinic if they had specific questions when they attended their outpatient appointments. With this support they gradually adapted to the drop-in service.
Over the past 12 months there have been only two Saturdays when no-one has attended: one was a bank holiday weekend and the other was just before return to school in September. Attendance has varied from 0 to 9 children, parents or adolescents (average 3) each Saturday. As the families came to realise there was a PDSN available in the department, Saturday morning telephone calls increased dramatically, making it a very busy time for the nurse on duty.
Over the past 4 years, use of the DHC department has more than trebled. By 2000, visits to the department had risen to 388 a year, with 201 (52%) on Saturday mornings, and in 2001 there were 305 visits, with the same percentage on Saturday (Figure 1).
In the past year the drop-in service has been used by 37% of the families in the care of the Children’s Hospital, and by some from the neighbouring City Hospital, which has a small number of children with diabetes who come under the care of one of the DHC nurses.
Reasons for attendance
There are many reasons why young people with diabetes and/or their parents or carers attend the drop-in clinic; some are more common than others. Table 1 lists some of the more common reasons.
Patients’ and parents’ views
The young people and their families have given various reasons for liking the facility:
- Some mothers say that it is “really handy to just drop in on the way to the shops on Saturday morning”. This is helped by the fact that the new hospital site is in the centre of Birmingham.
- Teenagers have acknowledged that it is “better coming with a friend, than with Mom or Dad”, so that they can “talk about what we want to talk about and not have parents interrupting”.
- Others say that “seeing blood glucose readings on a graph after downloading the meter makes them much easier to understand.”
- Parents have expressed the feeling that it is “their time” because it is more peaceful than at the traditional clinic.
Lessons learnt
Perhaps the most surprising and unexpected attendees at the Saturday morning nurse-led drop-in clinic have been the adolescent patients. Two-thirds of those attending on a Saturday morning for the past 2 years have been aged 11 years or over (Figure 2), with the majority coming without their parents.
Many young people go shopping in Birmingham on a Saturday and several have taken the opportunity to call into the department, with their friends, to discuss their problems. Skinner et al (1999) have highlighted the importance of peer support during adolescence and have shown that it is particularly beneficial to young people with diabetes. The support they receive from their friends may influence self- efficacy and raise their self-esteem and improve their quality of life. Attending the clinic with their friends provides an opportunity for the PDSN to talk to them both about topics that are relevant to them.
Newton and Greene (1995) demonstrated the importance of directing education and support at the young person’s interests and concerns. Significantly, a number of young people choose to come and discuss their personal problems, as they develop a rapport with certain nurses from the team.
Students who are away at university have chosen to come home for a weekend so that they can drop in to discuss problems they may be experiencing with their glycaemic control, to change treatment or to view new equipment.
Some young people choose to drop in each week or two during difficult times to discuss their problems and targets, thereby developing a closer rapport with the nursing team.
Many of the younger teenagers find the information they obtain from downloading the results of their blood glucose meter particularly interesting, providing the nurses with an opportunity to discuss individual targets for control.
Conclusion
The drop-in facility has been used by all age groups, but seems to be most beneficial for adolescents, who are making contact with the diabetes team at their convenience, at a time when many choose to ignore their diabetes.
The Diabetes Control and Complications Trial Research Group (1994) demonstrated the importance of good blood glucose control in reducing the progression of long-term complications in adolescence. Hence any strategy that offers adolescents the opportunity to develop an understanding of their diabetes must be beneficial, especially if it is associated with close support from friends.
Acknowledgements
I would like to acknowledge the work of the nursing team, Lorraine Shaw, Emma Thomas and Simon Holmes, in the development of this service.
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