Working With Parents
Parents as partners – working with parents in trials.
Is consumer and community involvement about participating in research?
Consumer and community involvement is about working with researchers and other stakeholders to make decisions about research priorities, policy and practice. It is not about participating in a research project (Staley 2009)
Encouraging parents to provide input into your research idea at a very early stage can be a valuable and rewarding aspect of modern trial design. Ideally you will be able to consult with local parents to help establish what they want to know from research and what is important to them. Concepts to discuss with parents include:
a. Priority setting for research topics and questions
Once you have an idea of what is important to parents you can use that information when developing your team’s research priorities.
c. Project specific involvement
Parents and clinicians can work together on the design of individual trials from concept development through to data collection and endpoint delivery. This will be particularly useful in studies implementing follow up.
Some points to consider are:
i. Relevant research questions and designs
- Shaping questions
- Choosing outcomes (Williamson 2012)
ii. Recruitment planning
- Input into the content of patient information sheets (1)
iii. Input into analysis and interpretation
- What does it all mean?
- Dissemination and follow-up
- Targeting messages
- Writing for lay audiences
d. Culturally safe research
Cultural safety begins with awareness of your own cultural expectations and how these can be different others. Checking your assumptions about a different cultural group is a useful start point for effective communication.
Research participants need to feel included, respected, and heard if they are to trust researchers and be willing to share information with them (Wilson 2009, Cameron 2010)
PSANZ Consumer Advisory Panel
As the views and experiences of mothers and their families are important to its work, PSANZ has established a Consumer Advisory Panel (CAP) to provide advice to PSANZ from a consumer perspective.
Resources introducing consumer involvement in rese
The Resource Library of the Health Issues Centre
The Resource Library of the Health Issues Centre has a wealth of resources on involving consumers in research. Type “research involvement” in their search engine.
Some of the things you will find include:
The University of Western Australia
The Consumers Health Forum
- A resource known as ‘The Green Book’ or Consumer and Community Participation in Health and Medical Research, A practical guide for health and medical research organisations by McKenzie & Hanley which includes a practical guide to establishing consumer involvement at an organisational level as well as giving guidance on involving people in individual research projects.
- The Resource Pack for Consumer and Community Participation in Health and Medical Research produced by National Health and Medical Research Council [NHMRC] and Consumers Health Forum of Australia [CHF], which provides information for consumers wanting to get involved in research and for researchers wanting to know the information consumers may find useful when participating in health and medical research.
Involving People in Research
Guidelines for researchers on health research involving Māori
Staley K. (2009) Exploring Impact: Public involvement in NHS, public health and social care research. INVOLVE, Eastleigh.
A systematic review of the literature published in 2009 found that despite limitations there were strong and consistent themes that showed: public involvement had a positive impact on research recruitment; had particular value in both qualitative research and clinical trials. See: http://www.invo.org.uk/wp-content/uploads/2011/11/Involve_Exploring_Impactfinal28.10.09.pdf
Kirwan J, Heiberg T, Hewlett S, Hughes R, Kvien T, Ahlmèn M, Boers M, Minnock P, Saag K, Shea B, Suarez Almazor M, Taal E. (2003) Outcomes from the Patient Perspective Workshop at OMERACT 6. J Rheumatol, 30:868–872
James Lind Alliance, See http://www.jla.nihr.ac.uk/top-tens
Williamson, P. R., Altman, D. G., Blazeby, J. M., Clarke, M., Devane, D., Gargon, E., & Tugwell, P. (2012). Developing core outcome sets for clinical trials: issues to consider. Trials, 13(1), 132.
Consumer involvement in processes to identify outcomes for research consistently raises outcomes not previously considered.
Nilsen ES, Myrhaug HT, Johansen M, Oliver S, Oxman AD. Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material. Cochrane Database of Systematic Reviews 2006, Issue 3. Art. No.: CD004563. DOI: 10.1002/14651858.CD004563.pub2.
Wilson, D., & Neville, S. (2009). Culturally safe research with vulnerable populations. Contemporary Nurse, 33(1), 69-79.
Cameron, M., Andersson, N., McDowell, I., & Ledogar, R. J. (2010). Culturally safe epidemiology: oxymoron or scientific imperative. Pimatisiwin, 8(2), 89.
Reid, J. B., & Taylor, K. (2011). Indigenous mind: a framework for culturally safe indigenous health research and practice. Aboriginal and Islander Health Worker Journal, 35(4), 4.
(1) A Cochrane review found that involving consumers in the development of information material for patient resulted in more relevant and readable material that was understandable to patients.