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Participation in communication and decision-making: children and young people's experiences in a hospital setting
Imelda Coyne1, Pamela Gallagher
1Faculty of Health Sciences, School of Nursing & Midwifery, Trinity College Dublin, Dublin, Ireland. coynei@tcd.ie
Insights
Children want to engage in healthcare communication and decisions, but often have limited roles. Supporting children
Area of Science:
- Pediatric Healthcare
- Patient Experience
- Child Rights in Healthcare
Background:
- Growing international recognition of children's right to participate in decisions affecting their lives.
- Increased support for children's involvement in healthcare communication and decision-making.
- Limited existing research on children's participation experiences in hospital settings.
Purpose of the Study:
- To explore the experiences of hospitalized children and young people regarding their participation in communication and decision-making.
- To understand children's perspectives on their involvement in healthcare discussions and choices.
Main Methods:
- Qualitative research design.
- Data collected through focus groups and single interviews.
- Involved 55 participants aged 7-18 from three Irish hospitals.
Main Results:
- Children desired inclusion in communication but often played a marginal role, with adults dominating discussions.
- Participants wanted to influence 'small' everyday decisions but were often limited by adult actions.
- Adults (parents and health professionals) significantly influenced the facilitation and support of children's participation.
Conclusions:
- Children's preferences for decision-making participation vary, ranging from deferring to adults to sharing decisions.
- Decision-making involvement should be viewed as a continuum, not an absolute.
- Clear guidelines and policies are needed to support children's voices in healthcare, addressing adult concerns and ensuring their right to be heard.
Aim:
To explore hospitalised children and young people's experiences of participation in communication and decision-making.
Background:
There is a growing recognition internationally that children and young people have a right to participate in matters that affect their lives. Although this has led to more support for children's participation in communication exchanges and decision-making in health care, there remains a lack of studies in this area.
Design:
Qualitative.
Method:
Data were obtained through a combination of focus groups and single interviews with participants aged 7-18 (n = 55), from three hospitals in Ireland.
Results:
Children wanted to be included in communication exchanges but appeared to occupy a marginal role with discussions largely carried out between parents and health professionals. They wanted to participate in 'small' everyday decisions about their care and treatment but were constrained mainly by adults' actions.
Conclusion:
Although children want to be included in the decision-making process, some prefer to leave the more 'serious' decisions to parents and health professionals, whilst others prefer to share the decision. Children's preferences can vary; therefore, decision-making should be seen as being on a continuum rather than an 'all or nothing' basis.
Relevance To Clinical Practice:
Health care professionals and parents appear to play a significant role on whether children's efforts to participate are facilitated and supported in the hospital setting. Clearly, some may have reservations/concerns about children's participation, which suggests the need for clear guidelines/policies that reflect all stakeholder views. Children should be supported in having their voices heard in matters that directly affect their lives.
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