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What do adolescents require from a diabetes service?

Una McErlean

Diabetes can be an added stress for teenagers during the stormy years of adolescence. They may see health professionals as authoritarian and indifferent to their needs. This study, carried out in the Royal Victoria Hospital, Belfast, attempted to discover the views and opinions of adolescent patients, with a view to providing a more patient-led service. Nineteen teenagers took part in the study. The results of the study led nursing staff to conclude that they needed to examine their practice with regard to these patients, particularly all aspects of education.

Adolescence is a period of rapid physical and psychological development. Erickson (1979) described it as a period of ‘storm and stress’ for the adolescent and his/her family. This age-group frequently challenges authority and established behaviour at home, school and in society generally (Gardiner, 1997). Weissberg-Benchell et al (1995) point to various studies which have shown that adolescents are the age-group least likely to adhere to their prescribed treatment regimens.

Henkinen and Kyngas (1992) maintain that adolescents with diabetes may feel that health professionals are guided by routine, are authoritarian and indifferent, and are interested only in diabetes and not in the adolescent personally. 

In 1989, the World Health Organization (WHO) urged the health services to take into account the special needs and sensitivities of adolescent patients. This initiative has gained momentum in recent years, with organisations such as the Royal College of Nursing (RCN) (1994), WHO (1995) and the British Diabetic Association (BDA) (1996) supporting the view that adolescent care should be structured, relevant and patient led.

Against this background, the diabetes specialist nurse (DSN) in the Royal Victoria Hospital (RVH), Belfast, decided to study the care given to the adolescent patients seen in their clinics.

The RVH runs two diabetic clinics per week, each with 55–65 people attending, and one Saturday clinic a month, which was initially intended as an adolescent clinic, but in reality is also attended by older patients who have work commitments during the week. The number of adolescents attending the clinics is relatively small, with only one or two at the weekday clinics and five to eight at the Saturday morning clinics.

Aim of the study
The aim of the study was to improve the care given to our adolescent patients, by taking into consideration their views and opinions on the service currently provided.

Patients and methods
The onset of adolescence varies from person to person, but is commonly defined as the teenage years. For the purpose of this study it was decided to include patients from 13 years of age (13 being the youngest age of clinic attenders) to 19 years inclusive.

Over a 12-week period, all patients within this age group who attended for their diabetic appointment were given a questionnaire on arrival at the clinic and asked to complete it and return it to the receptionist before leaving the clinic. All of the 19 questionnaires given out were completed and returned.

The questionnaire contained 17 questions, both open and closed, on such issues as care at diagnosis, care at routine clinic visits, and support between clinic visits (Table 1).

Results
The ages of the adolescents completing the questionnaires ranged from 14 years to 19 years. The length of time since diagnosis ranged from 9 months to 16 years. Twelve of the adolescents had attended the adult clinic since diagnosis; the remainder had transferred from the paediatric clinic.

All 19 patients had initially been admitted to hospital to commence insulin injections and time spent in hospital ranged from 3 days to 7 days. Eight (42%) stated that they would have preferred not to have been admitted; seven (37%) had been diagnosed as young children and had answered ‘not appropriate at all’. Nine (47%) patients would have liked to have spoken to someone their own age at diagnosis and 11 (58%) would be prepared to speak to someone newly diagnosed with diabetes.

When asked which day and time they would prefer for their clinic visit, 14 (74%) stated Saturday morning and five (26%) a weekday morning. Eleven (58%) would like a clinic solely for people of their own age.

Seven (37%) respondents always saw the doctor with their parents present, eight (42%) occasionally saw the doctor on their own and four (21%) always saw the doctor on their own.

Nine (47%) respondents would like the choice of seeing the DSN in place of the doctor at some clinic visits; the remainder had no preference.

The areas on which the respondents felt they lacked information included:

  • Alcohol (12; 63%)
  • Sick days (10; 53%)
  • Hypoglycaemic attacks (1; 5%)
  • Eye testing (1; 5%).

Eighteen (95%) of the respondents had contact numbers if they needed advice between clinic visits, and 11 (58%) had used this service at least once.

In general, the open questions elicited very few responses. No-one could list any videos, books, leaflets, etc. that they found helpful either at diagnosis or since. 

There was one suggestion as to how to improve care at diagnosis: ‘If in hospital, arrange some sort of physical activity instead of lying around all day’. ‘Improve waiting times’ was the only comment with regard to improving care at the clinic, and one person suggested that transfer from the children’s clinic would have been easier if someone they knew had transferred at the same time.

Discussion
It was difficult to determine the exact number of adolescent patients attending the diabetic clinic, owing to the inability of the hospital computer system to select patients by age. However, it was estimated that approximately 30 teenagers attended the adult clinic. Although only a small number of patients were involved in the study, the results have served to focus attention on teenage patients whose needs could easily be overlooked in a large adult clinic.

Our practice to date has been to admit patients to hospital to commence them on insulin injections, regardless of their medical condition. Nursing staff have long considered this to be inappropriate for everyone, and this study has provided the stimulus for discussion of this issue among all members of the multidisciplinary team. 

Despite the lack of research demonstrating that adolescent-only clinics improves adolescent behaviour (Skinner, 1997), it is generally accepted that they are preferable to any other for adolescent patients (Gardiner, 1997). Fifty-eight per cent of respondents in this study wanted such a clinic, with 14 of the 19 respondents happy with a Saturday morning clinic. One solution proposed was to set aside the first hour of the Saturday clinic solely for adolescent patients.

Results showed that the teenagers in the study lacked information on issues such as alcohol, contraception, and exercise, with those diagnosed the longest requesting information on sick days and footcare (Table 2).

These results were of concern to the nursing staff for two reasons. First, they believed that they had conscientiously discussed matters such as alcohol and contraception with this age group. Secondly, they assumed that those with long-standing diabetes would know how to deal with situations such as sick days. Evidently, nursing staff needed to question their practice. Why were patients not receiving information that nursing staff perceived they had given? 

Part of the answer perhaps lay in the fact that none of the teenagers could list any teaching aids that they remembered or had found useful. Clearly the whole educational package needed to be evaluated, but how could this information be put across more  effectively?

Day (1996) suggested that a computer compact disc was an interactive tool which would ensure that educational programmes were more learner-centred, with materials generated in the main by patients rather than professionals. The BDA (1996) recommend that education should always be adjusted to take into account the developmental stage of the patient and should be consistent, organised, repeated and evaluated. An effective method of evaluation was another area that we needed to address. 

Purcell (1995) found group meetings to be an effective method of getting the right information across and of improving relationships between teenagers and health professionals. Interestingly, parents were not included in these meetings. Others have suggested that it is beneficial for adolescents to see health professionals without their parents as it encourages them to take over responsibility for their care (Savage, 1990). Seven of our teenagers stated that they never saw the doctor on their own, and two of these were 19-year-olds who had had diabetes since childhood. Perhaps we should recommend that all adolescent patients see the doctor or DSN at least once a year without their parents being present? 

It was gratifying to note that all but one of the respondents had contact numbers in case of an emergency and many had used these numbers when needed.

Action plan

  • To discuss the issues raised with all members of the multidisciplinary team, e.g. commencement of insulin in an outpatient setting, providing opportunities for adolescents to see health professionals without their parents, and producing written protocols to guide practice
  • To organise a dedicated adolescent clinic
  • To produce a structured, written education programme for adolescents that will describe how the programme will be delivered, reinforced and evaluated
  • To introduce a ‘buddy’ system for teenagers who are newly diagnosed with diabetes
  • To evaluate the progress made in the above and to audit the effect of changes made in 9 months’ time.

Conclusion
The results of this study have not been surprising. The value of it has been to bring adolescent issues to the attention of the multidisciplinary team. It is only the beginning of the development of a patient-led service. The views of all of our adolescents need to be sought on a regular basis and the DSN is well placed to take this initiative forward.

REFERENCES:

British Diabetic Association (1996) The Principles of Good Practice for the Care of Young People with Diabetes. BDA report. BDA, London
Day JL (1996) All this education: is it worthwhile? Practical Diabetes International 13(4): 125–7
Erickson E (1979) In: Hilgard E, Atkinson RC, eds. Introduction to Psychology. 7th edn. Harcourt Brace Jovanovich,
Gardiner P (1997) Social and psychological implications of diabetes mellitus for a group of adolescents. Practical Diabetes International 4(2): 43–6
Henkinen A, Kyngas H (1992) Compliance of young diabetics with health regimens Journal of Advanced Nursing 17: 530–6
Purcell H (1995) Practical experiences with children and young people’s diabetes education Practical Diabetes International 12(5):
Royal College of Nursing (1994) Caring for Adolescents: Issues in Nursing and Health No 33. RCN, London
Savage DCL (1990) Diabetes in adolescence. Practical Diabetes International 7(1): 12–5
Skinner C (1997) Health behaviour, adolescence and diabetes. Practical Diabetes International 14(6): 165–7
Weissberg-Benchell J, Glascow AM, Douglas W, Wirt P, Turck J, Ward J (1995) Adolescent diabetes, management and mismanagement. Diabetes Care 8(1): 77–82
World Health Organization (1989) The Health of Youth. WHO, Geneva
World Health Organization (1995) Diabetes Care and Research in Europe: The St Vincent Declaration. Action Programme Implementation Document.

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