Involving children and young people in healthcare

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Involving children and young people in healthcare
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• Why is involvement of children and young people
  different?
• Enabling greater engagement and participation
  does present particular challenges for those
  commissioning and delivering services for
  children and young people. We have come to
  realise at last that if we want to know what
  children and young people think we must ask them.
  We can not assume that as adults we can ever see
  things from the perspective of a child or young
  person and nor should we expect parents and other
  carers to be able to give an accurate proxy view
  of a child. This is not to say that they do not
  also hold views that we should also listen to,
  but rather that the two viewpoints are not
  interchangeable. What this means is that we have
  to put in place sustainable and robust structures
  and systems to engage with the children and young
  people who use, or potentially will use, our
  services.

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Map existing activity

• Undertake a brief audit of involvement activity.
• PPI covers a spectrum of activity, including
• user participation in decisions about treatment
  and care
• user involvement in service development e.g.
  planning and design of services, commissioning
  and
• user evaluation of services.
• Gaps in your PPI activity.

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Define the aims and goals of new activity

• Key questions you need to consider in this phase
  are
• Why are you involving people?
• What do you want to change, evaluate or develop?
• Is this a continuous and proactive involvement
  activity to support key decision making, or
  ongoing decisions about service redesign?
• Is this an activity which is responding to a
  particular issue identified through audit or
  raised, for example, by the Local Involvement
  Network (LINk)?

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Identify existing information

• This is an essential part of the involvement
  process in order to
• avoid undertaking activities that are already
  taking place elsewhere
• enter into an activity or process with the best
  available evidence to hand
• identify what sorts of activities have been
  successful in the past and
• identify the staff who have experience and
  expertise in involvement, who can help identify
  what has been done before as well as advising on
  appropriate approaches.
• A good starting point is to make sure you are
  aware of legal and policy information that relate
  to the activity, large scale relevant research
  and any relevant public health or demographic
  data.

6
Identify available resources

• Identify what you already have and what you need.
• You need to consider including
• staff time
• fitting the methods to the available resources
• reimbursement of peoples expenses/reward and
  recognition for their time and
• support for staff and people you involve.
• A dedicated and realistic budget is crucial to
  support involvement activities across an
  organisation.

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Identify people

• In the first instance, those you wish to involve
  are likely to
• be in one or more of the following
  categories
• patients or carers/advocates and former carers
• potential patients and carers including either
  specific groups of people who are consider to be
  excluded or hard to reach
• the general public
• members of local voluntary and community
  organisations
• commissioners of services and
• service providers.
• You can then segment these groups into smaller
  subsets by characteristics such as age, gender,
  known illness, occupation and so on. You will
  then need to decide on how many of each
  category or groups you will involve.

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Identify methods

• The method or methods must fit the activity.
• Consider all of those questions identified in
  earlier phases
• Why are you involving people?
• What are your aims and goals?
• What have you done before in this area? What has
  worked and what has not worked?
• What resources (money, people, time) do you have
  at your disposal?
• Which segments of the community do you need to
  involve?
• There are, of course, many times when a single
  method of involvement will not be sufficient and
  the nature of activity requires a mix of methods
  in order to maximise involvement.

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Work out how you will evaluate the activity

• Evaluation is a crucial aspect of PPI.
• You must choose an evaluation process that
  reflects
• why you are involving people (who)
• what the focus is (what) and
• and using which methods (how).
• You must evaluate your work to see if it has had
  an impact and whether that impact is an
  improvement.
• This not only helps you in your current work but
  will inform future activity.

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Identify how you will feed back

• Prompt feedback is especially important in the
  area of
• end of life care.
• All who participate in PPI activities, i.e.
  patients, carers, members of the public and
  staff, should routinely receive feedback about
  initiatives in which they involved, explaining
  the outcome, impact and if necessary explaining
  why it was not possible to implement their
  suggestions.

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For more information
www.actionforsickchildren.org
www.nhscentreforinvolvement.nhs.uk
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Reading list

• Action for Sick Children (1998) Pictures of
  Healthcare - A childs eye view. Action for
• Sick Children, London.
• Action for Sick Children (2006) Principles of
  Involving Children and Young People in the
  Service Planning and Delivery Processes for
  Hospital Services. Action for Sick Children,
  London.
• Alderson P Montgomery J (1996) Health Care
  Choices making decisions with children. London
  Institute for Public Policy Research (IPPR)
• Badham B Wade H (2005) Hear by Right. Standards
  for the active involvement of children and young
  people (revised edition). National Youth
  Agency/Local Government Association.
• Boyden J Ennew J (Eds) (1997). Children in Focus
  a manual for participatory research with
  children, Rädda Barnen, Stockholm.
• Cavet J Sloper P. (2004a) The participation of
  children and young people in decisions about UK
  service development. Child Care, Health and
  Development (30) pp 613-621.
• Cavet J Sloper P. (2004b) Participation of
  disabled children in individual decisions about
  their lives and in public decisions about service
  development. Children and Society (18) pp
  278-290.
• Coad, J (2007) Using art based techniques in
  engaging children and young people in health care
  consultations audit and/or research, Journal of
  Research in Nursing. September. Vol 12 (5)
  p567-583.
• Coad, J Houston, R (2007) Involving children and
  young people in the decision-making processes of
  healthcare services. Action for Sick Children.
  London