User perspectives on Cleft Research

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User perspectives on Cleft Research

• Rosanna Preston
• CLAPA Conference
• 30th May 2009

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Why involve users?

• Parents and people with clefts
• can offer a different perspective from
  researchers
• identify the practical problems that they need
  solutions to
• have detailed and specific knowledge about the
  condition and its impact
• have a right to have a say on something that will
  affect their lives
• want to feel part of the process and in control
  of the care they are receiving

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The importance of the user perspective

• Avoids stigmatising or depersonalising patients
• Helps the researchers see the person not the
  scientific problem
• research is with and for the benefit of the
  user not on or about
• Ensures that research is directed towards
  improving care rather than the latest hot topic

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User Research Priorities

• Understand the condition better
• Be sure that they or their child is getting the
  best possible treatment
• Know that they are giving the best care to their
  child
• Know they are doing everything they can to avoid
  it happening again
• Outcomes that will be of practical benefit
• Information!

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Topics for Research

• Three broad areas (from forums)
• Causes of cleft lip and palate
• Treatment
• Long term impact of cleft lip and palate

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Causes

• Lack of a known cause makes it easy for parents
  to blame themselves and wonder if they could have
  prevented it happening
• Parents tend to pick up on specific things that
  happened in the pregnancy, particularly if
  someone else had the same experience
• How can parents avoid it happening again

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Treatment

• Care and Management
• Here and now
• Variations
• Feeding
• Options and successes
• Short and long term impact of difficulties

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Long term impact

• Why do some people cope and others not what
  coping strategies do people use
• What are the long term effects of CLP on
  education, job prospects, relationships positive
  and negative
• Impact of societys attitude

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How do you involve users?

• How do users influence research topics and
  priorities and get involved in evaluating
  proposals?
• Do users know what research is being done?
• How can we get a true understanding of users
  interests and priorities?
• Role of CLAPA

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CLAPAs role

• Point of contact and source of reliable and
  accurate information for parents
• Future plans increased local presence, research
  policy, local representation
• Branches, parent contacts, volunteers, forums

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How to involve users
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Consultation

• Ask users for their views and use these views to
  inform your decision-making eg one-off focus
  group meeting

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Collaboration

• Active, on-going partnership with users
• member of steering committee,
• helping to design, undertake and/or disseminate
  the results of a research project.

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User control

• The focus of power, initiative and subsequent
  decision making is with service users rather than
  with the professional researchers. 
• It does not mean that service users undertake
  every stage of the research, or that
  'professional' researchers are necessarily
  excluded from the process altogether. 

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Practical issues for researchers

• Provide training
• Write a job description
• Explain the project you are asking them to become
  involved in (or inviting them to undertake) and
  its background
• why you are approaching them
• what you are asking from them
• what resources you can offer to enable them to
  contribute effectively

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Practical Issues for researchers

• the level of involvement they can expect and why
  (consultation, collaboration, user control)
• the benefits to them
• how long it is likely to take
• who the research will benefit
• potential risks

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Impact of Research

• What happens to the results of research?
• are they disseminated between teams
• do they lead to changes in practice
• does planned research build on existing research
• international perspective

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Information

• Research page on CLAPA website what format do
  users want?
• Cleft nurse specialists are a key source of
  information to parents do they know about what
  research is going on

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Views on the future

• Collaborative working
• Building trust of parents and people with CLP
• Accessible information
• Confidence in the quality of care
• Clear research strategy that builds on existing
  research and leads to improved care for people
  with clefts and their families