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Empowering young people with long-term illness
Stephen Abbott1, Linda Cairns, Helen Davies
1City University, London.
Insights
A new program for children with long-term conditions, based on the Expert Patient Programme, improved social skills and confidence. Preliminary data suggests reduced healthcare utilization, empowering participants to manage their health.
Area of Science:
- Pediatric Health
- Chronic Condition Management
- Health Services Research
Background:
- National Service Framework recommendations for children with long-term conditions.
- Adaptation of the Expert Patient Programme for pediatric populations.
- Targeting children with high healthcare utilization.
Purpose of the Study:
- To evaluate a newly developed program for children and young people with long-term conditions.
- To assess the program's impact on participants' self-management, confidence, and healthcare use.
- To provide support for children managing chronic illnesses.
Main Methods:
- Development of two age-specific programs (5-11 and 12-18 years).
- Recruitment of children with high primary and/or hospital care usage.
- Evaluation using questionnaires to gather feedback.
Main Results:
- Participants reported enhanced social contact and confidence.
- Improvements noted in family communication and relationship dynamics.
- Acquisition of new skills for managing long-term conditions.
- Preliminary data indicates a potential reduction in health service use.
Conclusions:
- The program appears successful in helping young participants acknowledge their illness.
- Participants reported feeling more in control of their lives and health.
- Findings suggest the program's effectiveness in empowering children with chronic conditions, though further research is warranted.
Abstract:
In response to recommendations in the National Service Framework for children with long-term conditions, a programme was developed based on the Expert Patient Programme for adults. Children who were heavy users of primary care, hospital care or both were invited to attend one of two programmes: the first for young people aged between 12 and 18; the second for children aged between five and 11. Evaluation feedback was obtained using questionnaires. Findings included benefits to young people of social contact, increased social confidence, improved family communications and relationships, and acquisition of new skills. Preliminary data indicates some reduced use of health services by these children and young people following the programme. Although the findings should be treated with caution, they suggest that the programmes achieved their aim of helping participants to acknowledge their illness and feel more in control of their lives.
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