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Table 1 CCRs' agreement with statements about CCP in the Alcohol and Pregnancy Project

From: Collaborating with consumer and community representatives in health and medical research in Australia: results from an evaluation

Compliance with the project Terms of Reference - to provide comment and advice on:

Agreementawith statement

(n = 7)

 

Agree

Unsure

Disagree

   1. The relationship between the project, cultural, spiritual and social values with respect for the richness and integrity of the cultural inheritance of Aboriginal peopleb

1SA, 2A

  

   2. The management of data, publications, and the protection of individual and/or community identities during the project c

1SA, 4A

1U

 

   3. The methodology, conduct, dissemination of results and potential outcomes of the projectc

1SA, 5A

  

   4. Alcohol use in pregnancy and how it was dealt with in a culturally sensitive way c

2SA, 4A

  

   5. Project documents such as consent forms and participant information sheets, interview guides, questionnaires and health promotion resources

3SA, 4A

  

   6. The final report and draft reports and manuscripts before they were published in scientific journalsc

2SA,1A

3U

 

   7. The preparation and development of summaries for the community and disseminationc

2SA, 3A

 

1D

Compliance with Telfords' principles of successful consumer involvement:[46]

   

   1. Roles of researchers were agreed between researchers and consumers

6A

1U

 

   2. Researchers budgeted appropriately for the costs of consumer and community representatives

2SA, 2A

3U

 

   3. Researchers respected the differing skills, knowledge and experience of consumer and community representatives

4SA, 3A

  

   4. Consumer and community representatives were offered training and personal support to enable them to be involved in the research

1SA, 3A

3U

 

   5. Researchers had the necessary skills to involve consumer and community representatives in the research process

1SA, 5A

1U

 

   6. Consumer and community representatives were involved in decisions about how participants were both recruited and kept informed about the progress of the research

1SA, 5A

1U

 

   7. Consumer and community representatives' involvement was described in research reports

1SA, 4A

2U

 

   8. The research findings were available to consumer and community representatives, in formats and language that could be easily understood

1SA, 5A

 

1D

CCRs' perceptions of their participation in the project:

   

   1. Consumer and community representatives' viewpoints were valued by the researchers

5SA, 2A

  

   2. Consumer and community representatives' contributions were recognised by the researchers

3SA, 4A

  

   3. Consumer and community representatives' participation added value to the project

5SA, 2A

  
  1. a Possible options: Strongly agree (SA), agree (A), unsure (U), disagree (D), strongly disagree
  2. b This Term of Reference was specifically for the Aboriginal Community Reference Group (n = 3)
  3. c Respondent stated the question was not applicable