Resources
Research essentials Patient-public engagement and involving children and young people CENTRAL TO the modernisation agenda in the UK, patient-public involvement (PPI) emphasises the involvement of service users and carers in all aspects of health care, from commissioning of services and service design to contributing to research agendas. This involvement is grounded in a desire to make health care more responsive to the needs of the patient and enhance the quality of care and treatments. Since its ratification in 1991 the guiding principles of the United Nations’ Convention on the Rights of the Child (1989) underpins healthcare laws and strategies. Three articles are pertinent to patient-public engagement (United Nations 1989): Article 12: acknowledging that children and young people’s ability to form and express views is made explicit Article 13: ensuring the child and young person has a voice is a guiding principle that takes into account the age and stage of development Article 24: acknowledges the right to good quality healthcare provision While these guiding principles are explicit, the extent of service-user and carer involvement across the range of healthcare provision remains patchy (Atkinson 2013). To date, involvement has primarily focused on adult services with minimal consideration to the specific needs of the child or young person. Finding a starting point to include children and young people in PPI initiatives can be daunting. However, there are resources that can demystify the process. Blades et al (2013) has highlighted that children and young people should participate in strategic decision making and, although progress has been made, children’s
participation has not been embedded into everyday practice. Engaging with children means thinking about a range of approaches including the use of social media. It is clear that a move towards a concerted approach to children and young people being involved at every level of healthcare decision making is yet to be established. Shaw et al (2011) is a useful resource for choosing and planning research methods, providing an insight to the research process. The guideline also addresses points for consideration, such as accessing gatekeepers, issues of power and identifying where the locus of control lies with each stage of children and young people’s involvement in research. Ethical issues and consent are also considered. There are useful insights to appropriate methods of data collection across age groups. Example I participated in a consultation with children and young people to ascertain their views on the design of a new ward. The challenges related to ensuring participatory activities were meaningful, enjoyable and non-threatening across the age ranges. Gaining their views was achieved using low-technology approaches (Box 1) and quickly because of the project building deadline. The methods of collecting information were selected as age-appropriate methods to fit the context. Since this consultation took place, it is acknowledged that similar information could be achieved by using a mobile device. Some of the consultation took place in a relaxed, open-air setting during a planned social barbecue event. These simple but effective methods of gaining insight to views worked well. The children were enthusiastic
Geek speak Patient-public engagement Active involvement of service users and carers as partners in their own health care, service design, delivery and evaluation of programmes of study offered to healthcare students. Participatory research methods A process where questions and issues evolve. These questions and issues are significant to the researcher and participants as co-researchers. and readily communicated their views. The information from the consultation was presented at a meeting where the decisions were made by considering the views of the children and young people in relation to colour and thematic choices. Key messages The child and young person’s contributions to the PPI agenda needs strengthening to guide healthcare professionals in future service developments. Participatory research methods should be selected according to the age range of those being consulted so they can effectively participate as service users. References Atkinson M (2013) Foreword by the children’s commissioner. In Blades R et al We Would Like to Make a Change. Office of the Children’s Commisioner, London. Blades R et al (2013) We Would Like to Make a Change. Office of the Children’s Commissioner, London.
Box 1 Method of eliciting children and young people’s view in our consultation
Shaw C et al (2011) Guidelines for Research with Children and Young People. National Children’s Bureau, London
Stage one
Conversations and recording of ideas on a questionnaire.
United Nations General Assembly (1989) Convention on the Rights of the Child. UN (UK), London.
Preparation
Devising questionnaire containing four questions. Preparing paint colour charts for lamination. Preparing clip art for suggested themes.
Stage two
2D room colouring sheet for recording ideas (younger age group). 3D room box for recording ideas (older age group).
12 July 2014 | Volume 26 | Number 6
Sue Collier, senior lecturer/course leader, pre-registration nursing (child), Anglia Ruskin University, on behalf of the RCN’s Anglia Research in Child Health Community
NURSING CHILDREN AND YOUNG PEOPLE
Downloaded from RCNi.com by ${individualUser.displayName} on Nov 24, 2015. For personal use only. No other uses without permission. Copyright © 2015 RCNi Ltd. All rights reserved.
Research essentials Patient-public engagement and involving children and young people CENTRAL TO the modernisation agenda in the UK, patient-public involvement (PPI) emphasises the involvement of service users and carers in all aspects of health care, from commissioning of services and service design to contributing to research agendas. This involvement is grounded in a desire to make health care more responsive to the needs of the patient and enhance the quality of care and treatments. Since its ratification in 1991 the guiding principles of the United Nations’ Convention on the Rights of the Child (1989) underpins healthcare laws and strategies. Three articles are pertinent to patient-public engagement (United Nations 1989): Article 12: acknowledging that children and young people’s ability to form and express views is made explicit Article 13: ensuring the child and young person has a voice is a guiding principle that takes into account the age and stage of development Article 24: acknowledges the right to good quality healthcare provision While these guiding principles are explicit, the extent of service-user and carer involvement across the range of healthcare provision remains patchy (Atkinson 2013). To date, involvement has primarily focused on adult services with minimal consideration to the specific needs of the child or young person. Finding a starting point to include children and young people in PPI initiatives can be daunting. However, there are resources that can demystify the process. Blades et al (2013) has highlighted that children and young people should participate in strategic decision making and, although progress has been made, children’s
participation has not been embedded into everyday practice. Engaging with children means thinking about a range of approaches including the use of social media. It is clear that a move towards a concerted approach to children and young people being involved at every level of healthcare decision making is yet to be established. Shaw et al (2011) is a useful resource for choosing and planning research methods, providing an insight to the research process. The guideline also addresses points for consideration, such as accessing gatekeepers, issues of power and identifying where the locus of control lies with each stage of children and young people’s involvement in research. Ethical issues and consent are also considered. There are useful insights to appropriate methods of data collection across age groups. Example I participated in a consultation with children and young people to ascertain their views on the design of a new ward. The challenges related to ensuring participatory activities were meaningful, enjoyable and non-threatening across the age ranges. Gaining their views was achieved using low-technology approaches (Box 1) and quickly because of the project building deadline. The methods of collecting information were selected as age-appropriate methods to fit the context. Since this consultation took place, it is acknowledged that similar information could be achieved by using a mobile device. Some of the consultation took place in a relaxed, open-air setting during a planned social barbecue event. These simple but effective methods of gaining insight to views worked well. The children were enthusiastic
Geek speak Patient-public engagement Active involvement of service users and carers as partners in their own health care, service design, delivery and evaluation of programmes of study offered to healthcare students. Participatory research methods A process where questions and issues evolve. These questions and issues are significant to the researcher and participants as co-researchers. and readily communicated their views. The information from the consultation was presented at a meeting where the decisions were made by considering the views of the children and young people in relation to colour and thematic choices. Key messages The child and young person’s contributions to the PPI agenda needs strengthening to guide healthcare professionals in future service developments. Participatory research methods should be selected according to the age range of those being consulted so they can effectively participate as service users. References Atkinson M (2013) Foreword by the children’s commissioner. In Blades R et al We Would Like to Make a Change. Office of the Children’s Commisioner, London. Blades R et al (2013) We Would Like to Make a Change. Office of the Children’s Commissioner, London.
Box 1 Method of eliciting children and young people’s view in our consultation
Shaw C et al (2011) Guidelines for Research with Children and Young People. National Children’s Bureau, London
Stage one
Conversations and recording of ideas on a questionnaire.
United Nations General Assembly (1989) Convention on the Rights of the Child. UN (UK), London.
Preparation
Devising questionnaire containing four questions. Preparing paint colour charts for lamination. Preparing clip art for suggested themes.
Stage two
2D room colouring sheet for recording ideas (younger age group). 3D room box for recording ideas (older age group).
12 July 2014 | Volume 26 | Number 6
Sue Collier, senior lecturer/course leader, pre-registration nursing (child), Anglia Ruskin University, on behalf of the RCN’s Anglia Research in Child Health Community
NURSING CHILDREN AND YOUNG PEOPLE
Downloaded from RCNi.com by ${individualUser.displayName} on Nov 24, 2015. For personal use only. No other uses without permission. Copyright © 2015 RCNi Ltd. All rights reserved.
