Abstract
Aim
This study examined how children and adolescents with chronic medical conditions perceive and experience their healthcare education and participation in personal decision-making.
Methods
This study used participatory research methods and an adaptation of ethnography. A total of 26 children and adolescents with chronic conditions in hospital participated from various age groups. All participants were interviewed. Data were analysed using thematic analysis.
Findings
The themes identified were:
»Knowledge of illness. There were differences in the participants’ knowledge of their illness and this affected decision-making. Participants with a higher level of knowledge of their illness were able to identify their condition, provide an account of their experience and discuss management plans. There were some expected developmental differences in relation to knowledge of illness.
»Communication with healthcare providers. All participants agreed that effective communication and building relationships are essential to good care.
»Participation and decision-making. Most thought they had taken part in decision-making. However, they associated the degree of participation with the age and maturity of the child, acuity of condition, prior health experiences and the seriousness of decisions.
Conclusion
This study provided evidence that clinical practices often fail to provide equal opportunities for children to understand their condition, share their views and participate in decisions on their care.
The authors recommend the use of the universal design for learning (Rose and Meyer 2002), a model for inclusive educational practices that ensures all children, regardless of their age or ability, are provided with opportunities to learn.
This study examined how children and adolescents with chronic medical conditions perceive and experience their healthcare education and participation in personal decision-making.
Methods
This study used participatory research methods and an adaptation of ethnography. A total of 26 children and adolescents with chronic conditions in hospital participated from various age groups. All participants were interviewed. Data were analysed using thematic analysis.
Findings
The themes identified were:
»Knowledge of illness. There were differences in the participants’ knowledge of their illness and this affected decision-making. Participants with a higher level of knowledge of their illness were able to identify their condition, provide an account of their experience and discuss management plans. There were some expected developmental differences in relation to knowledge of illness.
»Communication with healthcare providers. All participants agreed that effective communication and building relationships are essential to good care.
»Participation and decision-making. Most thought they had taken part in decision-making. However, they associated the degree of participation with the age and maturity of the child, acuity of condition, prior health experiences and the seriousness of decisions.
Conclusion
This study provided evidence that clinical practices often fail to provide equal opportunities for children to understand their condition, share their views and participate in decisions on their care.
The authors recommend the use of the universal design for learning (Rose and Meyer 2002), a model for inclusive educational practices that ensures all children, regardless of their age or ability, are provided with opportunities to learn.
| Original language | English |
|---|---|
| Pages (from-to) | 21-21 |
| Number of pages | 1 |
| Journal | Nursing children and young people |
| Volume | 29 |
| Issue number | 10 |
| DOIs | |
| Publication status | Published - 5 Dec 2017 |
