Research and commentary

Adolescents' perceptions of healthcare education

Study also explored participation in decision making by children with chronic conditions

Koller D (2017) ‘Kids need to talk too’: inclusive practices for children’s healthcare education and participation. Journal of Clinical Nursing. 26, 17-18, 2657-2668.


Picture: iStock

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 the participants were interviewed. The data was analysed using thematic analysis.

Findings

The themes identified were:

Knowledge of illness

There were differences with regard to 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 the participants agreed that good communication and building trusting relationships were essential to good care.

Participation and decision-making

Most participants felt relatively listened to and participated in decision-making, however the degree of participation was associated with the age and maturity of the child, the acuity of the condition, prior health experiences and the seriousness of the decision.

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 regarding their care. The authors recommend the use of the universal design for learning (Rose and Meyer 2002). This is a model for inclusive educational practices which ensures all children regardless of their age and ability are provided with opportunities to learn. This incorporates multiple means of representation, expression and engagement of children.

Commentary

Relevance to clinical practice

Koller’s work adds to the evidence that children are not sufficiently involved in individual healthcare decisions (Livesley and Long 2013, Ehrich et al 2015).

Children’s right to participate in decision making is underpinned by the United Nations’ Convention on the Rights of the Child (1989). The best interests of the child must be a priority in all decisions and actions that affect children. Every child has the right to express their views, feelings and wishes in all matters affecting them, and to have their views considered and taken seriously. However, promoting children’s voices and competence to participate and be involved has been identified as challenging for healthcare professionals (Livesley 2010).

Children want to be involved in decisions about their care, and the benefits for them are that they feel prepared and less anxious and it promotes satisfaction with their healthcare (Coyne and Gallagher 2011, Coyne et al 2014, Törnqvist et al 2015).

According to Alderson et al (2006), children can and should make informed decisions about their healthcare in their best interests. Children’s nurses should adopt an individualised approach to involving children in decision-making. The individual approach should be based on a child’s wants and needs to participate and be involved (Alderson 2017). Healthcare professionals want to provide care in the child’s best interests and allowing children to voice their preferences, be listened to, be heard at a level commensurate with their competence, experience, age and ability and their evolving capacity to understand is of crucial importance (Alderson 2017). Good practice involves developing trusting relationships with children and ensuring participation requires knowledge, confidence and imagination (Ehrich et al 2015). 

 

References

  • Alderson P (2017) Children’s consent and the zone of parental discretion. Clinical Ethics 
  • Alderson P, Sutcliffe K, & Curtis K (2006) Children as partners with adults in their medical care. Archives of Disease in Childhood. 91, 4, 300-303.
  • Coyne I, Amory A, Kiernan G et al (2014) Children’s participation in shared decision-making: children, adolescents, parents and healthcare professionals’ perspectives and experiences. European Journal of Oncology Nursing. 18, 3, 273–280.
  • Coyne I, Gallagher P (2011) Participation in communication and decision-making: children and young people’s experiences in a hospital setting. Journal of Clinical Nursing. 20, 15-16, 2334–2343.
  • Ehrich J, Pettoello-Mantovani M, Lenton S (2015) Participation of children and young people in their healthcare: understanding the potential and the limitations. Journal of Pediatrics. 167, 3, 783–784.
  • United Nations (1989) United Nations Convention on the rights of the child
  • Livesley J (2010) Children's Experiences as Hospital In-patients: Voice, Competence and Work. University of Salford
  • Livesley J, Long T (2013) Children’s experiences as hospital in-patients: voice, competence and work. Messages for nursing from a critical ethnographic study. International Journal of Nursing Studies. 50, 10, 1292-1303. 
  • Rose D, Meyer A (2002) Teaching Every Student in the Digital Age: Universal Design for Learning. Association for Supervision and Curriculum Development. Alexandria, VA.
  • Törnqvist E, Månsson Å, Hallström I (2015) Children having magnetic resonance imaging: A preparatory storybook and audio/visual media are preferable to anesthesia or deep sedation. Journal of Child Health Care. 19, 3, 359–369.

Compiled by Angela Darvill, senior lecturer in children’s nursing at the University of Huddersfield, England on behalf of the RCN’s Research in Child Health community.   

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