A review of literature about involving people affected by cancer in research, policy and planning and practice

Gill Hubbard, Lisa Kidd, Edward Donaghy, Charlotte McDonald, Nora Kearney

Research output: Contribution to journalArticlepeer-review

80 Citations (Scopus)

Abstract

Objective To systematically review the literature on involving people affected by cancer in healthcare research, policy and planning and practice.

Methods Database searches, cited author, and grey literature searches were conducted.
Results 131 documents were included. Rationales for the agenda of involvement represent two polar characteristics of modernity: individualism and collectivism. In research, people acted as advocates, strategists, advisors, reviewers and as participatory researchers. In policy and planning, people were involved in one-off involvement exercises and in longer-term partnerships. Men, those with rare cancers, children, and people who are socially deprived have been rarely involved. There is little research evidence about the impact of involvement. Training and information, resources and a change in attitudes and roles are required to implement an agenda of involvement.
Conclusion The USA, the UK, followed by Canada and Australia have promoted an agenda of involvement.
Practice implications A dissemination strategy to share good practice; involvement of all types of people; an individualised and flexible approach; training, resources and a shift in thinking from paternalism towards partnership working are required. More research is needed about the impact of involvement and relationships between rationales for involvement and implementation.
Original languageEnglish
Pages (from-to)21-33
Number of pages13
JournalPatient Education and Counseling
Volume65
Issue number1
Early online date24 Jul 2006
DOIs
Publication statusPublished - Jan 2007

Keywords

  • Cancer
  • Community-based research
  • Decision-making
  • Self care
  • Involvement
  • Community-based services

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