Background Youht-R-Well.com is the Dutch independent organisation for young people with arthritis. The annual youth holiday week is one of their successful projects.
Objectives To share our experiences with organising a carefree holiday for youngsters with arthritis who need some support in accepting their disease.
Methods The first step to organise the holiday week is the formation of an enthusiastic team. This team consists of five young adults, including a nurse, who all have arthritis themselves. They are selected for their skills such as: perseverance, encouragement power, positive thinking and the ability to use their own experiences in guidance and supervising during this week. This team of experts is responsible for the organisation of the entire project such as acquiring sponsorship, finding a suitable, wheelchair accessible location and planning of the activities. The team also recruits ten youngsters in the age of 13-15. Good collaboration with rheumatologists and nurses is necessary as recruitment takes place by health professionals only. Youngsters are selected taking into account their struggle with the acceptance of their arthritis, disease severity and youngsters who barely go on a holiday. Membership of a patient organisation is not required. The holiday week is offered free of charge, as we do not want to exclude participants because of financial limitations. The youngsters can apply by filling in a questionnaire. After registration, the team decides on the final group formation based on these answers, age and sex. Next, the week itself needs to be planned. The participants have a large input in the selection of the activities which are a mix of recreation, education (information session with a rheumatologist) and sports, partly focusing on exploring their limitations (e.g. workshops in self-defence).
Results The youngsters really change during this week mostly from shy, stubborn and hesitant in the beginning to open and honest at the end. By taking into account everyone's limitations all youngsters can participate in all activities. The youngsters can set their own limits, for example when they need a wheelchair or a break. During the week, without parents, medication and other assistance is provided by the supervisors. This experience makes the youngsters more responsible, independent and confident, which is helpful for the beginning of their transition. The recognition and confirmation by other youngsters and supervisors with a rheumatic disease is very comforting. The holiday week gives the opportunity to build a relationship between participants and supervisors. Moreover it gives them the opportunity to discuss difficult topics such as experiences about medication and dealing with incomprehension. The supervisors help the youngsters in their process to deal with the disease, to challenge them and to stay positive. Evaluation by the participants and their parents revealed that this is much appreciated and valuable. All parents agree that this week has contributed to their child's development. In the future we would like to evaluate the contribution of this week with regard to self-management and transition.
Conclusions The youth holiday week has proved a successful method to help youngsters with the acceptance of the disease. Through friendships, guidance and challenging activities they develop more self-confidence, independency and are better prepared for their transition.
Disclosure of Interest None declared
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.