Nursing Research 6

12

An exploration of knowledge, attitudes and beliefs toward organ and tissue donation among the adult Haitian population living in the Greater Montreal Area

Registered nurses (RNs) working in critical care are caring for families from different cultures who are faced with the option of organ and tissue donation (OTD) (Lagacé, 2010). Not knowing how people from spe- cific ethno-cultural groups feel about OTD makes it difficult to tailor messages and interventions in a culturally sensitive manner. An example of a community that nurses would ben- efit from having increased knowledge about is the Haitian community. With the exception of Dunleavy’s study (2007) that explored consent and barriers to organ donation among Haitian immigrants living in Miami, Florida, no other research was found that explored Haitians’ opinions regard- ing OTD.

Haitians are at higher risk for kidney transplants due to docu- mented prevalence of hypertension and diabetes within their community (Desilets & Sodjinou, 2006). Telephone calls to RN colleagues working in Montreal hospitals’ dialysis units deter- mined that approximately eight per cent of patients receiving pre-dialysis support and monitoring were of Haitian origin

while 12% of dialyzed patients were of Haitian origin. These figures are important because ethnic minorities are reported to not donate as frequently as Caucasians (Morgan, Hooper, Mayblin, & Jones, 2006). Having fewer donors from a specific ethnic minority makes it difficult to identify suitable donor-re- cipient matches. Not having the proper match leads to double the transplant wait times and proportionally more deaths (Press et al., 2005). The human leukocyte antigen (HLA) is used to find suitable matches as they often differ from one ethnicity to another (Press et al., 2005). HLA differences between spe- cific ethno-cultural populations underscore the importance of exploring the knowledge, attitudes and beliefs of a particular community. Tissues, unlike organs, are universally shared so HLA matching is unnecessary.

Montreal is Canada’s third largest city and home to 90% of Haitian immigrants (Statistics Canada, 2007). They are the largest Black community in Montreal and Quebec’s eighth largest ethno-cultural group (Statistics Canada, 2010). Creole is the fifth most common language spoken

Background: The decision to donate organs and tissues has the potential to save and improve the quality of life of the transplant recipient. Previous studies suggest lack of information, fears, and prejudices have prevented some cultural minorities from par- ticipating in organ and tissue donation (OTD). There is scarce information about the views of those who might be approached for potential donation in the Haitian community. In fact, Haitians are the largest Black ethno-cultural community in Montreal and are at higher risk for needing a kidney transplant (Desilets & Sodjinou, 2006).

Purpose: To learn what Haitians know and believe about OTD in order to enable registered nurses to develop culturally appro- priate approaches and interventions.

Design: A qualitative descriptive design was used to explore the knowledge, beliefs, and attitudes toward OTD among the adult Haitian population in the Montreal area. Focus groups were held with 24 members of the Haitian community and moderated by Haitian registered nurses who spoke French and Creole.

Data analysis: Group interviews were transcribed verbatim and analyzed for themes. Adult participants represented younger and older members of the community. They were from different socio- economic backgrounds.

Findings: Knowledge about donation was influenced by the media, personal beliefs and experience, and level of trust in the health care system. Participants’ recommendations on how to address OTD issues within the Haitian community were shaped by beliefs about wholeness, perceived need for dona- tion and key persons who could influence decision-making behaviour.

Conclusion: The level of distrust with the health care system and the study consent process used with participants might have affected the degree of participation and disclosure in discussions.

Key words: Haitian, organ and tissue donation, knowledge, attitudes, beliefs, qualitative, exploration

Abstract

Sherry, W., Tremblay, B., Laizner, A.M. (2013). An exploration of knowledge, attitudes and beliefs toward organ and tissue donation among the adult Haitian population living in the Greater Montreal Area. Dynamics, 24(1), 12–18.

13

in Quebec other than French or English (Statistics Canada, 2011). Therefore, an exploration of the knowledge, attitudes and beliefs towards OTD of Haitians living in the greater Montreal area was needed. Not knowing how people from specific ethno-cultural groups feel about OTD makes it dif- ficult to tailor messages and interventions in a culturally sensitive manner.

Literature review Accreditation Canada has standardized OTD policy and procedures across Canada (Accreditation Canada, 2012). Practices in Quebec reflect these standards, which expect that all families whose deceased family member meets eligibility criteria are identified and approached about possible OTD (Transplant Quebec, 2011). When a death is not due to natural causes, approval for release of the body for OTD is required of a Quebec coroner (Bureau du coroner, 2012). Chambers- Evans and Carnevale (2005) conducted a qualitative study about surrogate decision-making at the end-of-life and con- cluded that personal values, cultural and religious/spiritual beliefs can influence the outcome. This is also supported by the summary report prepared by the Canadian Council for Donation and Transplantation (CCDT), which consulted diverse ethno-cultural communities about their perspectives on OTD (CCDT, 2005).

Organ and tissue donation studies Studies involving African-Americans that explored opinions on OTD demonstrated that they believed talking about death could be seen as tempting fate, that health care professionals might not make efforts to save a life if an organ donor card was signed, and they feared their organs would be removed before they were dead (Davis & Randhawa, 2004). In 2004, Morgan found that the willingness to engage in family discussions on organ donation was predicted by levels of knowledge, attitude toward donation, and perceived religious and social norms. African-Americans who talked about organ donation reported lower levels of medical mistrust and higher levels of altruism than non-talkers.

There are three important Canadian studies on organ dona- tion. Molzahn, Starzomski, McDonald and O’Loughlin (2004) conducted a naturalistic inquiry to obtain viewpoints on organ donation from the Coast Salish Nation in British Columbia. The themes that emerged were accepting fate, death routines/rituals, importance of body wholeness, not wanting to talk about organ donation, beliefs in transfer of the spirit and wanting to help others. In 2005, Starzomski and Curtis met with Aboriginal elders and used open-ended questions to collect information on their perceptions of death and donation. They reported that it was important to consult family members and elders, as the community mistrusted the white medical community. In addition, it was import- ant to remain culturally connected; to have an intact body when entering the spirit world and to know who the trans- plant recipients were to facilitate informed decision. When conducting a similar study, Molzahn, Starzomski, McDonald and O’Loughlin (2005) met with a Canadian Chinese com- munity. Themes highlighted family decision making and the

avoidance of discussions on death. Traditional values, beliefs and superstitions within this community played a major role in their decision to donate. Although some themes cut across different ethno-cultural groups, each had some specific val- ues and beliefs that would be important when considering an OTD discussion.

Objectives and research questions The purpose of this study was to gain an understanding of the knowledge, attitudes and beliefs toward OTD among the adult Haitian population in the greater Montreal area. The goal was to be able to provide culturally sensitive care and to develop tailored community messages. The following research ques- tions were developed: 1) What are the knowledge, beliefs, and attitudes toward OTD among the adult Haitian population? 2) What are their suggestions for improving culturally appropri- ate OTD messages?

Methods Design A qualitative descriptive design was chosen to allow partici- pants to express in their own words, their knowledge, attitudes and beliefs concerning OTD (Streubert & Carpenter, 2011). This particular study design was chosen due to its usefulness in generating rich data in the Canadian OTD studies. Permission was obtained from Starzomski and Curtis (2005) to use their open-ended questions about beliefs regarding organ dona- tion to gather the same type of information from the Montreal Haitian community. The questions were modified to ensure appropriateness (Table 1) and translated into French using for- ward and backward translation techniques (Streiner & Norman, 1995).

Recruitment strategies and participants A purposive snowball technique was chosen for recruitment of participants, as it allowed observing and interviewing people who were part of a particular culture and who could motivate others in their culture to take part (Streubert & Carpenter, 2011). Once ethics approval was obtained, a mem- ber of the Haitian community attended local cultural events and an interview was set up with a local Haitian radio sta- tion to invite community members to take part in the study. While neither of these was successful, a pastor and a Haitian community centre were able to identify a number of willing participants. The 24 people who chose to participate iden- tified themselves as Haitians and were at least 18 years of age. All participants were asked to sign a consent form that included the study objectives, a section on the freedom to withdraw consent at any time, and the contact telephone number of the university hospital Ombudsman should they have any concerns.

Focus groups and moderators Focus groups were chosen, as this format helps initiate discus- sions on a community’s views, and depersonalizes a subject with which participants may not be comfortable (Culley, Hudson, & Rapport, 2007). In addition, Lasch, Wilkes, Montuori, Chew, Leonard and Hilton (2000) noted that low literacy is not a fac- tor in group discussions. Therefore, future groups might bridge

14

the gap for understanding different points of view between ethnic minorities and health care professionals. To assist with discerning any inter-generational differences on knowledge, attitudes and beliefs, the focus groups were divided into four different age groupings (18–30 years, 31–45 years, 46–60 years and 61 years and up). This was done because “having a gener- ational mix in the groups might inhibit discussion” (Culley et al., 2007, p.104).

The focus group moderators were Haitian baccalaureate-pre- pared nurses fluent in French and Creole with skills in dealing with grief and loss. Previous studies have demonstrated that

minority focus group members value facilitators who are knowledgeable about the targeted ethno-cultural group and have some fluency in the language, which promotes trust and facilitates discussions (Coreil, Lauzardo & Heurtelou, 2004; Culley et al., 2007). Role playing prepared the moderators to deal with potential participant reactions, as the questions moved from broad and general to more specific ones related to the study’s objectives. For the focus groups that occurred during the supper hour, culturally appropriate food was pro- vided as a way of showing respect for their participation (CCDT, 2005).

Table 1: Open-ended questions for Haitian focus groups

The following questions are suggested to guide the discussion. Once the dialogue begins, different questions might emerge as people share their views.

Transition:

1. Awareness of organ and tissue donation and transplantation: “Think back to when you first heard about organ or tissue donation…” Did anyone ever explain to you what is organ and tissue donation? What words did they use? What do you know about organ and tissue donation?

2. Experience with organ and tissue donation and transplantation: Does anyone know a person who has donated? Could you talk more about that? Personal experience or knowledge of someone who has donated or consented to donation? Could you talk more about that? Did knowing someone who donated or consented to donation change your views [opinion] about it? Donation while alive or after death?

3. Views toward organ donation and transplantation: When would someone need to think about donation and transplantation? What do you hear said about donation and transplantation in your community? Help us to understand why someone might say yes or no to transplantation or donation for themselves or for their family members.

4. Views and traditional values and beliefs that influence Haitian people in regard to donation and transplantation. What do participants say about: Traditional and non-traditional beliefs about death and life after death. How the decision to donate organs or receive a transplant are made by individuals and within families.

5. From support to decision In order to support individuals and families who do not want to donate organs or receive a transplant, what can be done to help them? In order to support a family in the decision-making process, what can be done to help them at the consent, donation, and follow-up stages of the process? Are there things that a health care provider should be particularly aware of when helping a family to make a decision?

6. Relationship Building How do we go about continuing this dialogue with the Haitian community? How should we develop relationships with the Haitian organizations and other individuals concerned with donation and transplantation?

7. Closing What did we learn today that we could take forward to other groups? What worked and what did not work at this evening’s meeting? Closing comments and follow-up connections.

Note: Adapted from the CCDT circle questions asked of Aboriginal elders (Starzomski & Curtis, 2005)

15

Data collection and analysis Data were collected over a 13-month period, from November 2008 to December 2009. The focus group audio recordings were transcribed verbatim in French with bracketed Creole translated into French and then reviewed by the moderators for accuracy. The transcripts were coded to remove identifying nominative information and analyzed for themes by two of the investiga- tors. QSR International’s (2010) NVivo 9 qualitative data analysis software was used to look for similarities and differences based on influences of age, education, role or position in society and past experience (Streubert & Carpenter, 2011). Member check- ing was also conducted with two of the moderators to ensure that the responses were correctly classified. In the end, five major themes and 15 sub-themes were identified (Table 2).

Results Knowledge of organ and tissue donation Knowledge of OTD was based on what the participants knew or thought they knew about the subject, as well as the source of that information. Three sub-themes were identified: media, past experience, and first time hearing about donation, but curious. Four participants stated that they knew nothing about donation. Five participants demonstrated some knowl- edge on the subject, but also expressed some misconceptions. Their knowledge seemed to be based on movies like John Q (Cassavetes, 2002) and television documentaries that explored xenotransplantation. Three participants acknowledged that they personally knew someone who had benefitted from an organ transplant and three others had seen interviews with recipients on television. Only one participant openly acknowl- edged that her deceased son was a tissue donor and reflected some understanding of the process. Although many partic- ipants were limited in their knowledge, most were curious about the subject. One participant wanted to stay and listen to the discussion even though he felt that he had nothing to con- tribute. Interestingly, five of the 24 participants tried to elicit information from the moderators during the focus groups to increase their knowledge on OTD.

Beliefs related to organ and tissue donation Beliefs related to OTD were captured by asking about their personal views and about any views that might have been expressed within their families, their church or community. Several subthemes emerged from the discussions, including a belief in the integrity of the body or wholeness, the perceived need for OTD in the community, and the influence that reli- gion and family would have on the process. One participant believed it was important to go to God whole and another said he would donate his organs, as long as it did not inter- fere with him going to heaven. Five participants expressed the importance of religion in their community. Five others noted that Haitians generally do not talk about donation or trans- plantation, as they worry about how others might perceive their decision. This may account for the fact that one partic- ipant was under the impression that OTD is a “white” man’s issue. Family influences can be seen in a comment made by a participant who was under the impression that since his son had made his immigration arrangements to Canada for him,

the decision to donate organs and tissues would also be his son’s responsibility. Two other participants noted that even if an adult child made the decision to donate, older Haitian par- ents would likely try to override the consent to protect the integrity of the body.

Decisions pertaining to organ and tissue donation The participants’ views about potential decisions regarding OTD were captured by asking if anyone had any personal experience or knew someone in their community who donated. Decisions pertaining to OTD reflect the perceptions of involvement in deci- sion-making. Four participants who were in the 46- to 60-year age groups were adamant that donation is a personal decision and that family members should not be providing consent if the potential organ donor had not personally expressed support for OTD. The only exception to this is if the potential donor is a child, then the decision is perceived as a parental responsibility. Four group members discussed the importance of helping oth- ers regain their health, but when asked if they would personally donate, three of them clarified that while they thought it was a good idea for others, it was not something they would person- ally support. The participants did highlight, however, that the younger generation would likely be more open to the idea, as they are influenced by Canadian societal values.

Societal and medical distrust of intentions for procedures involving consent As forewarned by our ethno-cultural consultants, one of whom had conducted research in Haiti while the other was a Haitian minister, trust within a research agenda was not easily granted by focus group participants. This led to a study protocol vio- lation for one of the focus groups. Two of the focus group members expressed strong reservations about signing the con- sent to participate in the study prior to a discussion. They were worried that to provide consent for the study meant they were agreeing to donate their organs after they died. A third partic- ipant then asked the moderator if the participants could sign a single consent as a group so that the burden of the consent procedure would not be perceived as a personal responsibility. The other six participants in the focus group rallied to support the three dissenting group members. Some of the participants admitted they were distrustful of the written word, as they had been taken advantage of due to low literacy skills. In the end, all participants voluntarily chose to take part in the study, but only signed the consent form when the discussion ended.

The second sub-theme related to the worry that the physi- cians would save the organs, but not them. Three participants addressed this aspect of deceased donation, while three others stated that fate and God determined when it was your time to die, not a doctor looking for organs.

Suggestions for dissemination of information on OTD Each of the focus groups was asked to provide suggestions for appropriate ways to provide information about OTD to the Haitian community. Five participants believed the Haitian community was not open to OTD information, stating that it

continued on page 17…

16

Table 2: Knowledge, beliefs and suggestions about OTD

Theme Sub-theme Example

Knowledge of OTD

Past experience They asked if it’s … he has never been sick, and then they asked, but all his (body) parts were already dead, it was only his eyes that were good. I gave the eyes.

Media (TV, radio, newspaper, movie)

I don’t remember. What’s her name, Diane Hebert?

First time hearing about donation but curious

No, if I go I won’t hear anything.

Beliefs related to OTD

Bodily integrity I would like to return to God the same way he sent me here.

Perceived need It doesn’t work, it’s always the white people, and more, but look, it is useful, as the lady said the (transplanted) person has 11 years now. It is better, but …

Influence on decision making

Religion If this isn’t something that will prevent me from going to heaven, I have nothing against that.

Family / parent Well, if a young adult says listen to me, I plan to sign my card, some parents will feel obliged to say no, don’t do that because Haitian parents think they have control over their offspring, whether the children are 10 or 30 years old.

Culture The community is very closed. We’re not open to suggestions. It’s more, I won’t say, but it’s more for other people.

Decisions pertaining to OTD

Willingness to discuss organ donation

Maybe one day it will raise awareness among the people …, but for us Haitians, we may know something today and tomorrow we’ll forget about it.

Need for information … he’s lacking awareness, people don’t really know, maybe if they were informed and educated about it, they would be motivated to do it.

A personal decision …in the end, it’s my choice, but I still think that it needs to be talked about…

Societal and medical distrust

Power of the written word Yes, but we can’t make that public! Don’t write it down! The spoken word goes, but the written word remains.

Doctors will save the organs, but not me

The medical team won’t fight or make any effort to save me because I signed my card, they need my organs to give to others, Haitians are ready to die, but we want to die last.

Suggestions for disseminating OTD information

Use of Haitian health care professionals

The presence of our health care professionals in the media ... and if our presence was guaranteed and we were heard, I think it would be easier to raise awareness.

Use of the media (radio, TV) Why not include in a two-hour program full of almost useless chatter, a five- minute capsule?

Use of the Church It can begin in Church. Because it’s a big part of the (Haitian) community who are true believers, who are in church ...

Use of community centres When we meet like this, to explain, to talk, to converse, it’s ok, it gives you more knowledge.

Note: Words in brackets added to facilitate understanding of the text

17

would be a challenge to communicate the relevance of OTD. Despite the reservations expressed by the participants older than 45 years, many made a number of suggestions to assist with disseminating OTD information to promote informed choices. Four participants supported the idea of asking Haitian health care professionals or community leaders to create com- munity service announcements that could be disseminated via the radio and television to encourage family discussions. Three more participants strongly urged using the church to promote OTD, as many in the Haitian community are religious. The final suggestion, made by two participants, was to target community centres frequented by Haitians, as the organizers present on topics that are of interest and concern to the community.

Discussion The lack of openness to a discussion about OTD appears to lead to a lack of perceived need for OTD by members of the Haitian community. A number of participants expressed that they did not have enough information to make an informed decision regarding OTD and tried through direct and indirect ques- tions and comments to extract additional information from the moderators. This dichotomy highlights a vicious cycle, as par- ticipants acknowledged that the community would need to be more open to learn about OTD and talk about it in order to dispel misconceptions and to make informed decisions. While there was general agreement that older Haitians were unlikely to donate, the participants believed that younger generations would be more open to the idea, as they had been exposed to different societal values.

The Tri-Council Policy Statement on ethical conduct for research involving humans (Government of Canada, 2010) was consulted to better understand approaches consistent for research. Article 9.8 states “Researchers have an obliga- tion to become informed about, and to respect, the relevant customs and codes of research practice that apply in the par- ticular community or communities affected by their research” (Government of Canada, 2010, p. 117). While the policy applies to Canada’s Aboriginal people, it can also be extrapolated to include other Canadian immigrant communities, as they, too, have customs, values, and life experiences that will affect their ability or willingness to become involved in research stud- ies. Therefore, some flexibility in the consent procedure could facilitate clarity and comprehension, especially since informed consent is an ongoing process throughout the course of a study.

This study with members of the Haitian community provided rich details about the level of their knowledge and beliefs about ODT. It adds to the knowledge gained by the consultation con- ducted by CCDT (2005) with Aboriginal peoples, Chinese Canadians, and South Asian Canadians. In fact, there were some similarities with themes that emerged across the four communities: Haitian, Aboriginal peoples, Chinese Canadians, and South Asian Canadians. Specifically they related to: (a) one must go into the afterlife whole, (b) showing respect for those who accept or decline, (c) the close connection between faith and a person’s decision to donate, and (d) distrust in the med- ical system.

Limitations The study has a few limitations, the most important one being the level of trust with the consent process. While the use of the Haitian moderators who could communicate in French and Creole encouraged discussions, the level of distrust with docu- ments requiring a signature might have negatively affected the degree of participation and disclosure from the participants. This was overcome by paying attention to their concerns and making sure they understood the nature of the research and how the information would be used.

A second limitation concerns the recruitment of participants. Researchers have discovered that although a focus group’s feedback is rich in content, getting people to participate often took longer than if the groups were Caucasian (Streubert & Carpenter, 2011). This has been attributed to complaints from some ethno-cultural group members who have reported feel- ing exploited by research carried out in their communities when findings are not shared with them (Clark et al., 2003; Culley et al., 2007; Lasch et al., 2000). Therefore, we plan to disseminate the study results to Haitian community organiza- tions, our ethno-cultural consultants and the media, such as a Haitian radio station, in 2013.

Finally, the weather became an important issue, as snow and ice caused the cancellation of two focus groups. The January 2010 earthquake in Haiti put an end to any further attempts for consultation with the community, as people put their time and energy into helping loved ones.

Implications for nursing practice This study underscores the need to identify the starting point of any discussions and to tailor interventions for each Haitian family, as they will have different levels of knowledge and per- ceptions of OTD. It is crucial to properly assess each family as to the relevance of OTD. If their belief system and religious convictions are contrary to OTD, the discussion might better focus on exploring needed support related to grief and loss. Participants also expressed that a supportive resource nurse who can spend time with and provide information to the family is invaluable. This was especially stressed by the donor family participant who would have appreciated more emotional sup- port during and after the donation process. As with any offered medical or end-of-life option, it is always important to evaluate its potential impact on a person or family before initiating a discussion. A humanistic approach for dealing with someone experiencing acute grief is the first step to make, not the second.

Conclusion This study corroborated much of Dunleavy’s (2007) work and reflects many of the other concerns expressed by minority groups (CCDT, 2005; Molzahn, et al., 2004; Molzahn et al. 2005; Starzomski & Curtis, 2005) regarding the lack of knowledge, the need to maintain integrity of the body and the mistrust of outsider’s intentions. It is important for critical care nurses to keep in mind that when approaching a Haitian family to discuss OTD, an understanding of their culture and their value system does not mean it will translate into consent for donation, but it will ensure that the decision is an informed one.

…continued from page 15

18

Accreditation Canada (2012). Organ and tissue donation standards for de- ceased donors. Retrieved from http:// www.accreditation.ca/accredit- ation-programs/qmentum/standards/ organ-and-tissue-donation-standards- for-deceased-donors/

Bureau du coroner. (2012). Loi sur la re- cherche des causes et des circonstances des décès. R et r ie ve d f rom http:// www2.publicationsduquebec.gouv. qc.ca/dynamicSearch/telecharge.php?- type=2&file=%2F%2FR_0_2%2FR0_2. htm

Canadian C ouncil for Donation and Transplantation (2005). Diverse com- munities: Perspectives on organ and ti ssue donation and tran splanta - tion, a summary report. Edmonton, Alberta. Retrieved from http://www. organsandtissues.ca/s/wp-content/up- loads/2011/11/Diverse-Communities. pdf

Cassavetes, N. (Director). (2002). John Q [Film]. Los Angeles: Evolution Entertainment.

Chambers-Evans, J., & Carnevale, F.A. (2005). Dawning of awareness: The experience of surrogate decision mak- ing at the end of life. Journal of Clinical Ethics, 16(1), 1–18.

Clark, M.J., Cary, S., Diemert, G., Ceballos, R., Sifuentes, M., Atteberry, I., … Trieu, S. (2003). Involving communities in community assessment. Public Health Nursing, 20, 456–463.

Coreil, J., Lauzardo, M., & Heurtelou, M. (2004). Cultural feasibility assessment of tuberculosis prevention among per- sons of Haitian origin in South Florida. Journal of Immigrant Health, 6, 63–69.

Culley, L., Hudson, N., & Rapport, F. (2007). Using focus groups with min- ority ethnic communities: Researching infertility in British South Asian com- munities. Qualitative Health Research, 14, 102–111.

and attitudes toward organ dona- tion and transplantation among the

Black Caribbean and Black African population in Lambeth, Southwark, and L e wisham, United Kingdom. Transplantation, 78, 420–425.

Desilets, M.C., & Sodjinou, R. (2006). La transition nutritionnelle et son impact. Canadian coalition for global health re- search. Retrieved from http://www. ccghr.ca/default.cfm?lang=e&con- tent=si_projects&subnav=main

Dunleavy, V.O. (2007). A culturally com- petent approach to exploring barriers in organ donation consent among Haitian immigrants: Focus group findings and implications. Retrieved from http:// www.allacademic.com/meta/p168860_ index.html

Government of Canada. (2010). Tri- Council policy statement: Ethical conduct for research involving humans (2nd ed.). Retrieved from http://www.pre.ethics. gc.ca/eng/policy-politique/initiatives/ tcps2-eptc2/Default/

Lagacé, A-M. (2010). Don d’organes et groupes ethniques à Montréal: Le rôle des infirmières dans un contexte de décès neurologique. Montréal, QC: Université de Montréal Faculté des sciences infir- mières.

Lasch, K.E., Wilkes, G., Montuori, L.M., Chew, P., Leonard, C., & Hilton, S. (2000). Using focus group methods to develop multicultural cancer pain edu- cation materials. Pain Management Nursing, 1, 129–138.

Molzahn, A.E., Starzomski, R., McDonald, M., & O’Loughlin, C. (2004). Aboriginal beliefs about organ donation: Some Coast Salish viewpoints. Canadian Journal of Nursing Research, 36, 110– 128.

Molzahn, A.E., Starzomski, R., McDonald, M., & O’Loughlin, C. (2005). Chinese Canadian beliefs toward organ dona- tion. Qualitative Health Research, 15, 82–98.

Morgan, M., Hooper, R., Mayblin, M., & Jones, R. (2006). Attitudes to kidney donation and registering as a donor among ethnic groups in the UK. Journal of Public Health, 28, 226–234.

Morgan, S. (2004). The power of talk: African Americans’ communication with family about organ donation and its impact on the willingness to donate organs. Journal of Social and Personal Relationships, 21, 112–124.

Press, R., Carrasquillo, O., Nickolas, T., Radhakrishnan, J., Shea, S., & Barr, R.G. (2005). Race/ethnicity, poverty status, and renal transplant outcomes. Transplantation, 80, 917–924.

QSR International. (2010). NVivo quali- tative data analysis software version 9. Burlington, MA: QSR International Pty Ltd.

St arzomsk i, R . & Cur t is, B. (2005). Aboriginal elders’ and traditional knowl- edge keepers’ circles on organ donation and transplantation. Edmonton, AB: Canadian Council for Donation and Transplantation.

Statistics Canada (2007). The Haitian com- munity in Canada. Retrieved from http://www.statcan.gc.ca/pub/89-621-x/ 89-621-x2007011-eng.htm

St at i s t i c s C a n a d a ( 2 0 1 0 ) . C an a d a’s ethno-cultural mosaic, 2006 Census: Canada’s major census metropolitan areas. Retrieved from http://www12. statcan.gc.ca/census-recensement/2006/ as-sa/97-562/p19-eng.cfm

Statistics Canada (2011). Size and percent- age of population that reported speaking one of the top 12 immigrant languages most often at home in the six largest cen- sus metropolitan areas, 2011. Retrieved f rom http://w w w12.statcan.gc.ca/ census-recensement/2011/as-sa/98- 314-x/2011001/tbl/tbl1-eng.cfm

Streiner, D.L., & Norman, G.R. (1995). Health measurement scales: A practical guide to their measurement and use (2nd ed.). Oxford Medical Publications.

S t r e u b e r t , H . J. & C a r p e n t e r, D. R . ( 2 0 1 1 ) . Q u a l i t a t i v e r e s e a r c h i n nursing: Advancing the humanistic im- perative (5th ed.). Lippincott Williams & Wilkins.

Transplant Québec. (2011). Questionnaire médicio-social du donneur. Montréal, QC: Author.

REFERENCES

About the authors Wendy Sherry, BScN, RN, Nurse Clinician for Organ & Tissue Donation, McGill University Health Centre

Bernard Tremblay, RN, Nurse Clinician for Organ & Tissue Donation, McGill University Health Centre

Andréa Maria Laizner, PhD, RN, Nursing Practice Consultant – Research, McGill University Health Centre.

Address for correspondence: Wendy Sherry, Royal Victoria Hospital, 687 Pine Avenue West, S-11, Montreal, Quebec H3A 1A1. Phone: 514-934-1934, x-36590; Email: wendy.sherry@ muhc.mcgill.ca

Funding provided by The Newton Foundation, and the Montreal General Hospital, Royal Victoria Hospital and the Montreal Children’s Hospital Foundations

Copyright of Dynamics is the property of Canadian Association of Critical Care Nurses and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.