Participatory research in pediatric palliative care: Benefits and challenges

Journal of Palliative Care

Volumn 23, Issue 1, 2007, Pages 5-13

  Mongeau, Suzanne ^a   Champagne, Manon ^a   Liben, Stephen ^b  

^a UNIVERSITÉ DU QUÉBEC À MONTRÉAL   (Canada)

^b MONTREAL CHILDREN S HOSPITAL   (Canada)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 34147212784     PISSN: 08258597     EISSN: None     Source Type: Journal    
DOI: 10.1177/082585970702300102     Document Type: Review

References (37)

1. Mayer R, Ouellet F. La recherche participative. In: Mayer R, Ouellet F, Saint-Jacques MC, Turcotte D (eds). Méthodes de recherche en intervention sociale. Montréal: Gaëtan Morin, 2000; pp. 301-304.
2. Bourke L. Participatory research in breast cancer: a case study in regional Victoria. Contemp Nurse 2002; 12(3): 246-252.
3. Minore B, Boone M, Katt M, Kinch P, Birch S. Addressing the realities of health care in northern aboriginal communities through participatory action research. J Interpret Care 2004; 18(4): 360-368.
4. Banner RO, DeCambra H, Enos R, Gotay C, Hammond OW, Hedlung N, et al. A breast and cervical cancer project in a native Hawaiian community: Wai'anae cancer research project. Prev Med 1995; 24(5): 447-453.
5. Macaulay AC, Commanda LE, Freeman WL, Gibson N, McCabe ML, Robbins CM, Twohig PL. Participatory research maximises community and lay involvement. BMJ 1999; 319: 774-778.
6. Mitchell TL, Baker E. Community-building versus career-building research: the challenges, risks, and responsibilities of conducting research with Aboriginal and Native American communities. J Cancer Educ 2005; 20(1 suppl): 41-46.
7. Chen AM, Wismer BA, Lew R, Kang SH, Min K, Moskowitz JM, Tager IB. "Health is strength": a research collaboration involving Korean Americans in Alameda County. Am J Prev Med 1997; 13(6 suppl): 93-100.
8. Reese DJ, Ahern RE, Nair S, O'Faire JD, Warren C. Hospice access and use by African Americans: addressing cultural and institutional barriers through participatory action research. Soc Work 1999; 44(6): 549-559.
9. Chester MA. Participatory action research with self-help groups: an alternative paradigm for inquiry and action. Am J Community Psychol 1991; 19(5): 757-768.
10. Davies B, Collins JB, Steele R, Cook K, Brenner A, Smith S. Children's perspectives of a pediatric hospice program. J Palliat Care 2005; 21 (4): 252-261.
11. Davies B, Collins JB, Steele R, Pipke I, Cook K. Final Report. Family Voices: An evaluation of the impact on families of the Canuck Place children's hospice program. Submitted to the British Columbia Health Research Foundation Community Grants Program, 1999.
12. Davies B, Collins JB, Steele R, Pipke I, Cook K. The impact on families of a children's hospice program. J Palliat Care 2003; 19(1): 15-26.
13. Davies B, Steele R, Collins JB, Cook K, Smith S. The impact on families of respite care in a children's hospice program. J Palliat Care 2004; 20(4): 277-286.
14. Gray RE, Fitch M, Davis C, Phillips C. Challenges of participatory research: reflections on a study with breast cancer self-help groups. Hearth Expect 2000; 3(4): 243-252.
15. Kovacs PJ. Participatory action research and hospice: a good fit. Hosp J 2000; 15(3): 55-62.
16. Plumb M, Price W, Kavanaugh-Lynch MH. Funding community-based participatory research: lessons learned. J Interprof Care 2004; 18(4): 428-439.
17. Steele R, Davies B, Collins J, Cook K. End-of-life care in a children's hospice program. J Palliat Care 2005; 21(1): 5-11.
18. Wong DKP, Chow SF. Beyond clinical trials and narratives: a participatory action research with cancer patient self-help groups. Patient Educ Couns 2006; 60(2): 201-205.
19. Wright D, Corner J, Hopkinson J, Foster C. Listening to the views of people affected by cancer about cancer research: an example of participatory research in setting the cancer research agenda. Health Expect 2006; 9(1): 3-12.
20. Hopkinson JB, Wright DNM, Corner JL. Seeking new methodology for palliative care research: Challenging assumptions about studying people who are approaching the end of life. Palliat Med 2005; 19(7): 532-537.
21. Williams A, Selwyn PA, McCorkle R, Molde S, Liberti L, Katz DL. Application of community-based participatory research methods to a study of complementary medicine interventions at end of life. Complement Health Pract Rev 2005; 10(2): 91-104.
22. Cornwall A, Jewkes R. What is participatory research? Soc Sci Med 1995; 41(12): 1667-1676.
23. Green LW, George A, Daniel M, Frankish CJ, Herbert CP, Bowie WR, O'Neill M. Study of participatory research in health promotion: Review and recommendations for the development of participatory research in health promotion in Canada. Ottawa: Royal Society of Canada, 1995. The PR guidelines to assess a research project are now available on line at: http://www.lgreen. net/
24. Cousins JB, Whitmore E. Framing participatory evaluation. In: Whitmore E (ed). Understanding and Practicing Participatory Evaluation. Coll. New Directions for Evaluation, no 80. San Francisco: Jossey-Bass, 1998; pp. 5-23.
25. Databases: Health Sciences (a Sage full-text collection), PsycINFO, PubMed/Medline, Sociological Abstracts; searched on July 2006; no year limit; keywords: participatory research AND palliative, hospice, death OR cancer.
26. Minkler M, Fadem P, Perry M, Blum K, Moore L, Rogers J. Ethical dilemmas in participatory research: a case study from the disability community. Health Educ Behav 2002; 29(1): 14-29.
27. Trottier GD. Politique en soins palliatifs de fin de vie. Québec: Direction des communications du ministère de la Santé et des Services sociaux, Gouvernement du Québec, 2004.
28. L'Écuyer R. L'analyse de contenu: notions et étapes. In: Deslauriers JP (ed). Les méthodes de la recherche qualitative. Québec: Presses de l'Université du Québec, 1987; pp. 49-65.
29. Champagne M, Mongeau S, Laurendeau MC, Liben S, Carignan P. Conditions d'une bonne relation entre le bénévole, l'enfant atteint d'une maladie à issue fatale et sa famille. Cahiers de soins palliatifs 2004; 5(2): 5-28.
30. Mongeau S, Champagne M, Carignan P. L'accompagnement béné vole d'enfants atteints d'une maladie à issue fatale. Frontières 2004; 17(1): 48-55.
31. Mongeau S, Champagne M, Carignan P. Au-delà du répit et des activités...un message de solidarité. Cahiers de soins palliatifs 2006; 6(2): 81-103.
32. Mongeau S, Laurendeau MC, Carignan P. Le répit pour les familles ayant un enfant atteint d'une maladie à issue fatale. Nouvelles Pratiques Sociales 2002; 15(2): 169-185.
33. Davies B, Steele R, Stajduhar KI, Bruce A. Research in pediatric palliative care. In: Portenoy RK, Bruera E (eds). Issues in Palliative Care Research. New York: Oxford University Press, 2003; pp. 355-370.
34. Champagne M. Préparer des bénévoles à offrir du répit à des familles d'enfants gravement malades: une démarche collaborative de planification d'un programme de formation dans le contexte d'une recherche-action [dissertation]. Montreal, Quebec: Université du Québec à Montréal, 2007.
35. World Health Organization. WHO Definition of Palliative Care, 2006. Available from: http://www.who.int/cancer/palliative/definition/en/
36. Hubbard G. Kidd L, Donaghy E, McDonald C, Kearney N. A review of literature about involving people affected by cancer in research, policy and planning, and practice. Patient Educ Couns [in press].
37. Monroe B, Oliviere D (eds). Patient Participation in Palliative Care. A voice for the voiceless. Oxford: Oxford University Press, 2003.