Evaluation study of the Staying Positive

Pilot Workshops: a self management

programme for young people with chronic

conditions

Purpose

The purpose of this evaluation study is to assess whether the content of the pilot Staying Positive Workshops is appropriate; to examine participant perceptions and feedback of the relevance of the workshops on their ability to self management and to identify changes that could be introduced to the workshops

Methods

All of the young people who participated in the Staying Positive pilot workshops were sent an invitation letter by the National EPP Co-ordinator for the Children and Young People’s Pilot Workshop, inviting them to take part in this study. Twenty-six young people who participated in the pilot workshops in and from the surrounding areas of Bicester, Birmingham, Bristol, Formby and Oxford volunteered to take part. This study includes young people who participated in the 3 workshops and some who attended 1 or 2 workshops. Data was collected using an interview schedule with a mixture of closed and open-ended questions.

Aims

● To assess whether the content of the pilot Staying Positive Workshops is appropriate.

● To examine participant’s perceptions and feedback of the relevance of the workshops to their daily living.

● To identify changes that could be introduced to the workshops.

Main Results

• All young people we interviewed indicated that they enjoyed taking part in the workshops. They were all willing to recommend the Staying Positive Workshop to other young people living with a chronic or long-term condition

• The ideal number of participants in each workshop needs to be no less than 8 -10

• Workshops work best when a generic group includes several young people of similar ages or with the same condition or disability.

• Young people think that the Staying Positive Pilot Workshops provided new perspectives and ways of thinking about dealing with the difficulties they face in their daily lives.

• Young people brought to the workshop their own needs, problems and expectations which, in turn, influenced individual outcomes ranging from those who felt they have benefited greatly to those who only found it helpful in dealing with particular issues.

• Workshops helped some young people to accept that they have a chronic condition. It has also helped them to understand and differentiate between having a chronic condition and being a teenager with a medical condition. (For example being moody has to do with being a teenager and feeling more tired than others their own age has to do with being a teenager with a chronic condition).

• All young people interviewed for this study indicated that having young facilitators who also have a chronic condition is a key factor in achieving the aims of the workshop programme.

Managing health

• The Staying Positive workshop helped the young people we interviewed to become aware of the importance of self care and the consequences of poor management.

• The workshops underlined the importance of medication adherence. Teenagers with asthma and type 1diabetes reported positive changes in their attitude to taking their medication in public places.

• Workshops helped young people to understand the importance of talking to doctors directly rather than relying on their parents.

• The workshop environment was thought by many to be a big confidence booster because they met other young people with a chronic condition and felt accepted.

• Young people felt improved confidence in managing their condition and their medication. Some were more willing to explain their condition to friends, family and school peers.

• Attitudes towards doctors and medical advice were reported to have changed for the better as a result of participating in the pilot workshop. Many young people reported learning new ways to communicate with doctors and nurses.

Social life

• The workshops were useful for discussing difficulties at school and provided some ideas for improving school life such as speaking to school staff about their condition and explaining what they need to do when feeling unwell.

• Some young people noticed an improvement in the way they dealt with their homework and attributed it to their ability to manage their condition better than before.

Life skills

• Some young people reported changes in their ability to solve problems and make decisions in their lives.

• The workshops provided opportunities to talk to others about their condition and experiences – some preferred to do this rather than talk to other youngsters.

• The confidence that comes from understanding the importance of self care has made some young people more assertive when dealing with friends.

Home life

• Improvement in the management of the condition was thought to influence relationships with parents. Young people that are more involved in their self-care commented that their parents are more trusting than before and less uptight about letting them go out with their friends or being a bit more independent.

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