Ripples in the Water: a toolkit for Aboriginal people on hemodialysis.
Community health nursing
Kidney diseases (Care and treatment)
Canadian native peoples (Health aspects)
Rural health (Research)
Paterson, Barbara L.
Sock, Lee Ann
|Publication:||Name: CANNT Journal Publisher: Canadian Association of Nephrology Nurses & Technologists Audience: Trade Format: Magazine/Journal Subject: Health care industry Copyright: COPYRIGHT 2010 Canadian Association of Nephrology Nurses & Technologists ISSN: 1498-5136|
|Issue:||Date: Jan-March, 2010 Source Volume: 20 Source Issue: 1|
|Topic:||Event Code: 310 Science & research|
|Geographic:||Geographic Scope: Canada Geographic Code: 1CANA Canada|
In 2004-2005, the authors were engaged in a community-based research study with people of Elsipogtog First Nation to determine the causes of and solutions to non-adherence among community members with chronic kidney disease. This study highlighted the need for a toolkit intended for Aboriginal people who are required to undergo hemodialysis at a dialysis unit in a city away from their rural community, so that they are sufficiently educated, supported and resourced to access and experience culturally relevant health care. This paper presents the findings of a two-year community-based research study to develop the prototype or model for such a toolkit. The research involved meeting with nine community members in group meetings at least monthly over the two years to determine what such a toolkit should include and how it should best be presented. It also entailed an extensive review of relevant literature and relevant educational materials, as well as individual interviews with key stakeholders. The project resulted in a culturally relevant toolkit that can be staged according to people's readiness for the information and that fosters collaborative discussions between patients, family members and health care practitioners.
Keywords: Aboriginal, toolkit, community-based research, rural health
Chronic kidney disease is a significant concern in the consideration of Aboriginal peoples' health (Salvalaggio, Kelly, & Minore, 2003). The rates of chronic kidney disease among Aboriginal people are currently 3.2 times higher than the national average (The Kidney Foundation of Canada--Manitoba Branch, 2002; Green, 2003; Salvalaggio et al., 2003). Aboriginal people are three times more likely than non- Aboriginal Canadians to develop disease-related complications, such as renal failure (Cass, 2004). Consequently, Aboriginal people are generally well-represented in most urban dialysis units.
The geographical location of people receiving hemodialysis has been determined to be a significant determinant of their ability to attain necessary supports within their homes and within their communities (McKenna, Ryan, & McKenna, 2005; Phillips, 2009). The most pressing health-related problem for residents of rural and remote communities is lack of access to appropriate health care, particularly access to specialty care (Anderson, Yeates, Cunningham, Devitt, & Cass, 2009; Nagarajan, 2004). This problem is particularly significant for Aboriginal people who live in rural or remote areas of Canada (Anderson et al., 2009; Wardman, Clement, & Quantz, 2005).
This paper is a report of a two-year community-based research project in which two academic researchers worked with a team of nine community members from Elsipogtog First Nation in New Brunswick, Canada, to develop a toolkit for rural Aboriginal people who were beginning or expected to begin hemodialysis at an urban dialysis unit.
In addition to the usual health care concerns that plague rural areas, such as the shortage of physicians and communitybased hospitals, Aboriginal people in rural areas face a number of serious social and health inequities to a degree that surpasses most other areas of Canada (Nagarajan, 2004; Shah, Gunraj, & Hux, 2003). Aboriginal people who must leave their rural community to undergo dialysis often travel several miles from their home communities to a hospital in which health care practitioners are strangers and may not speak their language or understand their traditional ways (Anderson et al., 2009; Salvalaggio et al., 2003). In addition, Aboriginal people may not be able to afford the cost of parking, accommodation for an overnight stay, or telephone calls to their families. Being away from home during dialysis causes many Aboriginal people to experience stress and anxiety about the welfare of their families who remain on the reserve (Anderson et al., 2009; Salvalaggio et al., 2003; Watson, Hodson, & Johnson, 2002), resulting in physical symptoms, such as loss of appetite. The prospect of leaving their communities and families to receive dialysis in an urban hospital is so daunting that some Aboriginal people choose, instead, to refuse treatment (Anderson et al., 2009; Green, 2003; Salvalaggio et al., 2003), facing increasing impairments and certain death.
Rural Aboriginal people's encounters with mainstream health care have been shown to influence their utilization of health care services, as well as their willingness to enact plans of care developed by practitioners (Anderson et al., 2009; Wilson, Krefting, Sutcliffe, & Van Bussel, 1994). Aboriginal people in Canada have a long history of social and cultural disruption, as well as the exploitation of their resources and forced economic dependence that has resulted from their marginalization from mainstream society (Paterson, Perley-Dutcher, Francis, & Bigras, 2006). Aboriginal people may be reluctant to engage health care practitioners, or to follow their advice because of the unequal power relations that they perceive exist between them (Browne & Smye, 2000; Paterson et al., 2006; Wright, 2009).
The difference between Aboriginal peoples' and mainstream health practitioners' ways and understandings of health and well-being may be another factor that influences Aboriginal people's decisions to attend dialysis or comply with the prescribed regimen. Researchers have found that the difference between Western views of disease and biomedical intervention is a significant concern and the traditional Aboriginal view of well-being and family/community as priority often produces clashes between the two groups (Anderson et al., 2009; Bartlett, 2005; Paterson et al., 2006; Thompson & Gifford, 2000; Wright, 2009). There may also be other differences that affect Aboriginal people's intention and ability to adhere to the prescribed regimen. Nephrology practitioners often teach about the post-dialysis plan of care in one-to-one or group didactic interactions, supplemented by printed materials. Many Aboriginal people tend to prefer to develop a relationship with the health care practitioner over time, to involve their family and community supports in the learning, and to engage in dialogical learning strategies (The Kidney Foundation of Canada--Manitoba Branch, 2002).
In a study of the educational needs of Aboriginal people with kidney disease (The Kidney Foundation of Canada--Manitoba Branch, 2002), researchers determined that although the educational needs for Aboriginal people undergoing dialysis were similar to non-Aboriginal people, the printed materials available were written above the reading level of 60% of Aboriginal people in Canada. They reported that both health care practitioners and Aboriginal respondents alike believed that teaching for Aboriginal people should incorporate more culturally appropriate care and teaching strategies, such as sharing circles and videos that portray Aboriginal narrators and actors. This pointed to the need for education that is culturally sensitive and relied less on the usual printed media.
In 2004-2005, the Mi'kmaq community of Elsipogtog First Nation in New Brunswick identified a need for research to investigate the causes of and solutions to the high incidence of non-adherence of community members with chronic kidney disease to their prescribed diet and medications, as well as non-attendance at scheduled dialysis in the city. The research was a yearlong community-based research study involving both academic and community members on the research team, including the authors of the current paper (Paterson, Sock, Dobbelsteyn, & LeBlanc, 2005). The research study revealed that (1) Aboriginal people who went to the city for dialysis described that experience as frightening, lonely, and unhealthy because they were away from their families and community. They believed that many urban health care practitioners are prejudiced, they perceived many of the practices of the urban dialysis unit as culturally irrelevant, they often did not understand the written information that was provided to them, and they did not know how to access the resources and supports they needed both in the city and in their community. Consequently, they often chose to be absent from dialysis, despite the significant risks to their health. These findings were similar to those of other researchers who determined that the requirement to leave a rural reserve to obtain dialysis in the city, requiring negotiation of complex systems of mainstream and community-specific care, was a disruptive and stressful experience for Aboriginal people that resulted in fragmented and culturally irrelevant plans of care (Anderson et al., 2009; Kaufert, Longclaws, Elias, McKenzie, Ross, Jeffrey, et al., 1998); (2) urban health care practitioners were often unaware of what resources/supports existed in the patient's community and, consequently, referred the patient to other urban-based agencies and failed to communicate with health care practitioners in the reserve who provided community-based support for the patient. In addition, practitioners often held stereotypes and outdated notions of what services were paid for by First Nations Inuit Health Branch and the conditions on the reserve. This resulted in their developing post-dialysis plans of care that were not feasible and frequently prohibitive for the patient; and (3) family members and other informal caregivers within the community often did not understand the patient's experience of dialysis and were often unaware of how to advocate for the patient, how to obtain necessary resources and supports for the patient, and how best to support him or her. Because of the findings of this research, the community of Elsipogtog First Nation recognized a need for a toolkit to assist community members who required dialysis to access and obtain culturally relevant health care. They recommended that the toolkit incorporate culturally relevant ways of learning and that it include supplementary tools/resources for formal (i.e., health care practitioners in the city and in the community) and informal caregivers.
The objectives that underlay the research were to: (1) identify the content and preferred method of delivery of a toolkit that assists Aboriginal people on hemodialysis (i.e., "dialysis") to meet their need for a culturally relevant plan of care; (2) identify the content included in the toolkit that will assist informal (i.e., family or community) caregivers to provide support and appropriate resources to the ill family member; and (3) identify the content included in the toolkit that will assist health care practitioners in urban dialysis units to provide support and appropriate resources to the population of interest to meet the need for culturally relevant care. These objectives were developed in collaboration with the director of health and wellness at Elsipogtog First Nation and her designate upon submission of the research proposal to the Kidney Foundation of Canada for funding.
This study utilized a community-based research (CBR) approach in which the academic researchers and members of the Community Advisory Committee (CAC) engaged in problem solving, planning, and evaluation in order to (1) determine what was needed in the content of a toolkit that would meet the informational needs of Aboriginal people receiving dialysis, their significant others, and health care practitioners who provided care to them; (2) identify what was the most effective and culturally relevant way to present this content; and (3) produce a prototype or a model of the toolkit. The CAC consisted of 11 female community members: two Elders; four family members of people who were on dialysis or had been on dialysis; three health care providers in the community; and two people who were currently receiving hemodialysis. They formed the CAC upon invitation of the director of health and wellness in Elsipogtog First Nation.
The CBR research method has its roots in the early movements for social justice and anti-oppression and has evolved over time, as a method for effecting social change (Edgren, Parker, Israel, Lewis, Salinas, Robins, et al., 2005; Mail, Conner, & Conner, 2006; Naylor, 2002). It can include both qualitative and quantitative research strategies, but its hallmark is that community members and academics work in partnership to arrive at a solution to a problem that has been identified by the community. We conducted the research according to the following principles of CBR: (1) recognizing community as a unit of identity; (2) building on community strengths and resources; (3) facilitating collaborative, equitable partnerships across all phases of the research; (4) promoting co-learning and capacity building; (5) integrating and achieving a balance between research and action for mutual benefit; (6) using a cyclical and iterative process for intervention development; and (7) disseminating findings and knowledge gained to all partners (Israel, Schulz, Parker, & Becker,1998). These principles were reflected in our Memorandum of Understanding (MOU) with the community of Elsipogtog First Nation.
The CAC members decided in collaboration with the research team how often and where to meet, as well as what data they need to achieve the research goals. This research design provided a forum for CAC members to exchange ideas, knowledge, skills, and experiences that enabled the research to reflect an Aboriginal standpoint (Edgren et al., 2005). The CBR approach entailed a series of meetings (generally in-person in the reserve community, but twice, because of weather conditions, by telephone) over the two years. Each meeting after the first group discussion began by reviewing the recorder's notes from the last group discussion; these notes identified the major points of the discussion at that meeting. The CAC participants then revised, deleted, or added to the recorder's notes. These revisions were recorded as research data. We incorporated the use of traditional ceremonies and practices, as advised by the CAC. For example, we asked an Elder to open the sessions in prayer.
Each group meeting was moderated by a member of the research team and audiotaped. The group meetings generally began with a review of the recorder's notes from the previous meeting and then the research team shared relevant literature or evidence (e.g., interview transcripts). They concluded the meetings with discussion about the major insights they had gained in the meeting and a detailed plan of what activities needed to be completed prior to the next scheduled meeting (e.g., conduct a review of web-based toolkits; interview elders in the community).
The meetings or group interviews were initially focused on the experiences of the research team members that were relevant to the research (e.g., a community member who was a family member of a patient on dialysis described her frustration in knowing how to be supportive without "taking over") and ideas of what a toolkit should include. Within three months, the discussions changed in focus to what others (i.e., those interviewed or authors of relevant literature) said was needed in a toolkit for people receiving dialysis. In latter months, the focus of the group meetings became the actual content of the toolkit and how it should be best presented.
The theoretical underpinning of this study was the Aboriginal Life Promotion Framework in Research (Bartlett, 2005). This framework was developed in response to criticism of the application of traditional research approaches to the investigation of phenomena involving Aboriginal people. It was derived from relevant literature and various medicine wheels in Aboriginal tradition, and supported by research with three Aboriginal organizations. It incorporates the Aboriginal view of health as holism and interconnectedness, and highlights the need for researchers to consider not only culture, but also political, social, and economic influences on the phenomenon under study. For example, one of the central tenets of the framework is that the issue to be studied is related not only to Aboriginal culture, but having social, economic and political roots and implications. Consequently, in both the research process and the toolkit itself, we acknowledged the marginalized status of Aboriginal people in Canadian society and their history as oppressed people. For example, in a discussion of the anger that some Aboriginal people feel when they learn they will have dialysis, the manual in the toolkit reads, "if you are a survivor of a residential school or the child or grandchild of a survivor of residential schools, you may have learned to push down your anger because of your fear about what your anger will result in." Another example is when health care practitioners are told about a woman who chooses to avoid dialysis because of her fear that the doctors will chastise her, and we discuss this, as a common way of avoiding the oppression and marginalization that many Aboriginal people have experienced by non-Aboriginal Canadians throughout history.
Community identity is a central consideration of CBR (Naylor, 2002). Communities are defined locally (e.g., by geographic locations) and/or by shared needs, experiences, social ties, and commitments to joint action. We defined community as those living in Elsipogtog First Nation who have personal or related (e.g., as an informal or formal caregiver) experience with receiving or waiting for hemodialysis in an urban dialysis unit.
Elsipogtog First Nation inhabits the Richibucto Reserve that covers 4,120 acres. It is the largest Aboriginal community in New Brunswick and the second largest in Atlantic Canada. It is a community and has a population of 3,422 people. It is 110 km from the nearest dialysis unit. However, community members may travel as much as 400 km away to attend an urban dialysis unit. There is no home dialysis or satellite dialysis unit available at this time in the proximity of the community. At the time of the research, there were 12 people in the community who were receiving hemodialysis in urban hospitals.
The community advisory committee
The CAC met regularly throughout the project (at least once a month and, at times, as much as three times a month). Individual members were consulted, as necessary, if specific issues arose that required their counsel. For example, when we needed a title for the toolkit that would be culturally relevant, the Elder on the committee assisted us to bring a group of Elders together to determine the title. The toolkit was named "Ripples in the Water" as tribute to many Aboriginal people's close relationship with nature and to signify, in the words of one Elder, "that being on dialysis is like throwing a pebble into a still pool of water. It makes ripples. It affects every part of you, your body, your spirit, your emotions, your thinking. And it affects all those around you, your family, the community, and even the doctors and nurses that work with you."
The CAC members were selected by the community's director of health and wellness on the basis of the following criteria: adult (18 years or over) who is currently living in Elsipogtog First Nation; speaks and understands English; is involved with community activities, particularly in relation to health and social care; and has demonstrated an understanding of the community and its interactions with outside agencies. Participants were asked to sign an informed consent immediately prior to the first CAC meeting. They received an honorarium of $10 for each meeting in lieu of parking, transportation, child care and other costs.
We maintained a commitment to avoid overburdening CAC with the requirements of the research, preferring to organize data collection around their schedules and to encourage them to determine timelines. For example, the participants preferred to meet in the day, but, as one person had dialysis appointments on Monday/Wednesday/Friday and another on Tuesday/Thursday/Saturday, we alternated between the days of the week for our meetings.
The CAC members taught us about what is culturally relevant and appropriate in the design and implementation of the research. They reviewed the research plans and suggested modifications that reflected the unique culture and circumstances of the community. For example, we decided to have an "appreciation event" to profile the toolkit to the community at the end of the study. However, the CAC informed us that hand-delivered invitations would be much more effective than the posters we had planned to advertise the event. The CAC also suggested culturally-appropriate interview methods. For example, one community member on dialysis was described as "angry and distrustful" by the CAC. They advised that he be interviewed by two people he knew and trusted, both members of the CAC. On another occasion, the person interviewed was a native speaker and the CAC advised that one of the CAC members who also spoke Mi'kmaq attend the interview to help translate.
The CAC assisted us to identify and recruit a community member who was hired as a research assistant. She was effective in establishing rapport and gaining access to community members for the purpose of interviewing them. The community research assistant received training about dialysis, interviewing, research ethics and data analysis. This training was developed and implemented jointly between the research team and the CAC.
Five specialists in Aboriginal health or dialysis agreed to participate in the research, as consultants. They were asked to provide advice/feedback, as issues and questions arose within the research, and to review the proposed toolkit content for their comments and ideas. For example, two consultants, a nephrologist and a dialysis unit educator, arranged for the researchers to attend the dialysis unit and to film a member of the CAC on her "first" dialysis appointment. They also corrected some of the wording in the toolkit that described hemodialysis to be more accurate.
Because of the history of abuse of Aboriginal people by researchers, it is important that researchers attend to issues of ownership, communication, involvement, and benefit that are critical in establishing and sustaining collaborative partnerships with Aboriginal people. We signed a Memorandum of Understanding (MOU) with Elsipogtog First Nation that incorporated the ethical dimensions of community-based research, the OCAP agreement (Scharch, 2004) and the newly developed Canadian Institute for Health Research (CIHR) Ethical Guidelines for Research with Aboriginal People. This MOU included our acknowledgement of the importance of spiritual beliefs, the sacredness of the information we collect from and about community members and "cultural norms for respecting the sacred" (Quigley, 2006, p. 134). In addition, the research received ethical approval from the University of New Brunswick ethical review board.
The CBR study adapted the guidelines suggested by Holter and Schwartz-Barcott (1993) to develop an intervention in a series of mutually agreed-upon steps or action cycles (see Figure One). The research involved five stages that occurred as a spiral throughout the research. For example, at each group meeting, we determined what we had discovered in our previous meeting, in the literature that was shared at the meeting, and in the individual interviews or consultations that had been held since the previous meeting. This was the Knowing phase. We also engaged in discussions about what this knowledge meant to us in terms of our research (Thinking) and planned how to integrate this knowledge or address gaps in our knowledge (Planning). Following the meeting, we collected additional data or completed tasks that were assigned to us, as individual research team members (e.g., look at toolkits available on the web). This was the Action phase. At each meeting, we assessed the comprehensiveness and cultural relevance of what we had determined was essential to the toolkit (Evaluation). These phases were rarely consecutive or linear. For example, the thinking phase often involved components of evaluation and planning often led to discussions about what we did not know about the needs of Aboriginal people or about toolkit design.
[FIGURE ONE OMITTED]
In addition to group discussions, data collection also included other qualitative research strategies, such as an extensive literature review about the educational needs of Aboriginal people receiving dialysis and cultural competence in health care. We also conducted individual interviews with people identified by the CAC as able to provide input that would be significant to the research purpose. A total of 12 people (three family members; three health care providers; four people currently on dialysis; one person who has been told that she will be receiving dialysis in the future; and an Elder) were interviewed in individual interviews; four were male and the remainder female.
The individual interviews were structured according to questions that the CAC directed us to answer. For example, in our discussion about what we could tell families about supporting the patient, we recognized that we needed data about what was effective support. To identify what was effective, we also needed to know what support was not effective. The CAC suggested that we interview people who had been successful in supporting their family members while they were on dialysis and some who believed they had not been successful. Consequently, we identified three family members who had attempted to help their significant other. Two indicated they had found ways to offer and provide support that were successful, and one stated that her help had been rejected by the patient, or that it had caused conflict in the family. We were able to identify attributes of effective and ineffective family support from these interviews. Subsequently, in our interviews with people receiving dialysis and with our consultants, we were able to further refine this list and included this content in the manual section about offering and providing support to the patient.
We also reviewed websites, educational printed material, videos/DVDs about dialysis, as well as toolkits used to support/assist people with other diseases. We evaluated the effectiveness of the material (e.g., one video included people who spoke Cree, honouring Native languages, but without a translation, non-Cree speaking people would not understand what had been said). When required, we contacted the producers of these materials and asked questions about how they developed and used the material and what insights they might offer. For example, a practitioner who used a series of DVDs to foster group discussion among Aboriginal people indicated that the DVDs were too long (an hour each) and that an evaluation of the program showed that most attendees wanted the DVDs to be 15 to 20 minutes.
We provided regular updates about our research activities to the community throughout the project in articles in the local newsletter ("Elsipogtogeoei"). In these articles, we invited community members to provide feedback about the project or make suggestions. Contact information for the team was provided. We often included photographs of the research team at work. This proved to be an effective strategy to engage the community and to sustain the CAC members' commitment to the research.
Analysis of the interview data and document data occurred by content analysis according to the procedures described by Lederman (1991). Content analysis involved coding the transcript text into content categories, consisting of a word or phrase, by the process of selective reduction. These were then collapsed into overarching categories and, then, the categories were collapsed into overarching themes. For example, several interviews highlighted the benefits of sharing one's story with others who had also experienced dialysis. Although these data were initially coded as "sharing stories", "the benefit of storytelling", and "finding someone who knows", we eventually collapsed these into the category "Storytelling as a benefit." The five major themes that were identified in the research became the titles of the sections of the DVDs and manual in the toolkit. These were: "Using the Toolkit to Live Well on Hemodialysis", "About Hemodialysis", "Grieving the Losses and Embracing the Changes", "Families and Community Members Sharing the Journey", and "Getting What You Need in the Health Care System."
Analysis of the group discussions occurred in the critical reflections by the research team on the summary generated by the moderator. This occurred when members of the research team asked specific, often penetrating, questions about the summary. For example, in one group discussion, a CAC member asked, "So, if it is true that families can help in unhelpful ways, how do families and people on dialysis negotiate helping so that it truly benefits the person on dialysis?" This led to the identification of "Negotiating helpful helping" as a theme in the toolkit. We utilized the CAC to review and provide regular feedback about the way in which data were summarized and analyzed in the group discussions, an important step to ensure rigor of our analysis within the focus group (Krueger, 1994).
We used the following strategies to ensure the validity of the data revealed in the group interviews: the use of community advisors (CAC) to review and provide regular feedback about the process of the group interviews, asking the CAC participants to verify the summaries of each group discussion, and meeting with the CAC at the conclusion of the research to identify ways in which the research process could have been improved. In addition, at various times throughout the research, we consulted with the consultants to the project to validate our interpretation of the data and/or to obtain further information. The draft toolkit was assessed by the consultants, three community members who had not been previously interviewed and were beginning dialysis in the near future, and three people receiving dialysis who had been previously interviewed in the research. Their feedback was incorporated in the final toolkit.
In discussions with the CAC, and after a review of relevant literature and the interview and other data, we decided that the guiding principles of the toolkit would be:
* One Aboriginal person is not the same as the next. The toolkit should not imply that all Aboriginal people have the same ideas and ways of being. For example, in discussions with two of our consultants, we recognized that we should not use the medicine wheel picture to explain health in the toolkit, because it is not accepted as culturally relevant by all Aboriginal peoples. In the same way, we included many different traditional foods (e.g., salmon, pickled moose meat, caribou) in the discussions about diet.
* The voice and presence of Aboriginal people should be obvious in the toolkit. For example, the stories that are reflected in the toolkit should be those of Aboriginal people. The toolkit should contain photographs and pictures of Aboriginal people. We also believed that, at times, we should include the Mik'maq language (e.g., an Elder and a member of the CAC discuss in a DVD how Aboriginal people should advocate for culturally relevant care in the hospital--the Elder speaks in Mik'maq and the CAC member repeats it in English). This was deemed important, as a way of honouring the language of the community. We appreciate that just hearing their native language can make some Aboriginal people feel more comfortable.
* The content and method of presenting the toolkit should be relevant to Aboriginal people. Most toolkits about hemodialysis for non-Aboriginal people emphasize preventing infection or other complications and controlling symptoms. However, among many Aboriginal people, it is the connections between themselves, family and community, as well as living in balance that are most important. Consequently, the focus of the toolkit should be on (1) hemodialysis as contributing to wellness that is achieved in a balance of emotions, spirit, mind, and body; and (2) the importance of connection between the person on hemodialysis and his or her family and community.
* In keeping with the oral traditions of many Aboriginal peoples, the toolkit should draw on the stories of Aboriginal people who have experienced hemodialysis or who were caregivers of people on hemodialysis. The stories in the DVDs, developed as part of this project, and the manual are powerful teaching tools. For example, in the DVD "Families and Community Members Sharing the Journey", one mother tells a story of how she was forced to be away from the community because her daughter with chronic renal disease was hospitalized for months in a distant city. She relates how she and her daughter experienced isolation, financial and psychological distress, and alterations in family roles. She also provides details of how her community and family were able to support them throughout this ordeal (e.g., buying a computer so they could "talk" by web-cam).
* The toolkit should be accessible by all Aboriginal people. Therefore, the DVDs contain content that can be watched by someone with low literacy or heard by someone with limited vision. The themes in the DVDs and the manual are similar, but the manual contains additional information that could be read to the person with low literacy or vision impairment. The toolkit should also contain language that is understandable by people not familiar with medical terms. Consequently, we reviewed the language of the toolkit with CAC members, the consultants and various community members who were asked to provide feedback about the accessibility of the language.
As the toolkit is intended for people who are beginning (within the first three months), or going to start hemodialysis, it should deal only with the "need to know" information. It should not overwhelm people and it should not be overly negative. The people we interviewed who had received dialysis stressed repeatedly that the information they had received initially was "too much", "too scary" and needed to be staged. Although most expressed appreciation for the written information they had received about dialysis (including the Kidney Foundation of Canada Manual, "Living with Kidney Disease"), they admitted they had "put it on a shelf, not looking at it for several months. "Three people stated they had been asked by nurses during their initial visits to the dialysis unit if they had questions, but they had indicated that they had none. One said, "I couldn't even think of a question. I was so overwhelmed. They talk to you about everything, but all you can see is your blood going round and round and all the machines. I don't think I heard anything they said."
The final product of the research is a toolkit prototype intended to be used by Aboriginal people to help them to understand what being on hemodialysis will mean to them in their everyday lives. The toolkit is a 30 cm x 30 cm cardboard display that contains five DVDs (in inserts in the inside cover), a manual (stitched in the centre of the kit), and a calendar diary (in a fold on the last page). The cover has the title of the toolkit (Ripples in the Water) and a photograph of a leaf dropping dew into a pond that ripples with the impact of the dew drop. The inside of the toolkit contains many photographs of members of the community who participated in the research.
There are three parts to this toolkit: DVDs, a manual, and a calendar diary. People who are beginning or about to receive hemodialysis start using the toolkit by listening to the first DVD "Using the Toolkit to Live Well on Hemodialysis." They can listen to it alone or with others. It was suggested that they might want to ask their family, friends or health professional caregivers to listen with them so that they will hear the same content and will be able to ask each other questions or discuss concerns related to the topic. In the first DVD, an Elder and her daughter (community members who are actors) are videotaped in a meeting with a psychologist to view the DVD and then talk about what they learned and how they want to proceed with the remainder of the toolkit.
The DVDs and the manual in the toolkit are based on the same five themes that were derived from the analysis of the research data and both focus primarily on storytelling. However, the manual contains additional information about available resources and poses questions for each reader to consider:
* "Using the Toolkit to Live Well on Hemodialysis": an introduction to the toolkit and how it can be used in a variety of ways (e.g., a health practitioner could use it to foster group discussion among people beginning dialysis; a family member might use it to discuss questions and concerns with the person on dialysis)
* "About Hemodialysis": an introduction to why kidneys fail and how hemodialysis works. The DVD includes a simulation of the first day in a dialysis unit
* "Families and Community Members Sharing the Journey": a discussion of how family and friends can best support the person on dialysis, how they might inadvertently frustrate or constrain the ill person, and practical strategies to help the family member/friend know what the ill person needs and prefers
* "Grieving the Losses & Embracing the Changes": a discussion of the various reactions to the news that one is beginning dialysis and how to recognize when these reactions indicate that there is a need for professional help
* "Getting What You Need in the Health Care System": a discussion of how to advocate for personally and culturally relevant care in a dialysis unit and upon return to the home community. This section includes teaching for health care practitioners who might not be aware of some Aboriginal peoples' ways and traditions. For example, the manual section contains a story about a nurse who inadvertently insults an Elder, causing the Elder and her family to leave the hospital. There is also an explanation of the term "Elder" and the traditional understanding of respectful behaviours toward an Elder.
Each DVD is 12 to 18 minutes long. It discusses some aspect of the experience of being an Aboriginal person on hemodialysis. For example, in the DVD "About Hemodialysis", various members of the research team tell about how the kidney works in the body the same way a filter works in a car or snowmobile. A dialysis nurse and a member of the CAC act a scenario in which the nurse teaches a new dialysis patient about the dialysis machine and how it works. In all of the DVDs, the stories and insights of Aboriginal people are featured.
The toolkit also contains a manual that is divided into sections corresponding to the DVDs. In the manual, we provide stories, as a way of sharing much of this information. These stories are composites of the stories that the Aboriginal people shared with us. Composites were necessary to protect the confidentiality of those we interviewed. The following is an example of a composite story:
Delores's oldest brother, Martin, began dialysis after a long history of kidney disease. Delores and Martin had been close when they were young, but Martin's work, as a seasonal worker, often meant that he lived away from the community where Delores and her family lived. They had drifted apart and were "almost strangers" to one another. When Martin learned he would be on dialysis, Delores talked to her husband and children and suggested that because Martin was alone, he would need their help and support. They invited Martin to live with them. Since then, Delores has learned a great deal about dialysis and the hospital. This has helped her to become good at helping Martin to voice his needs with doctors and nurses. And she feels good that she has "been there" for her brother. She says, "It has been an honour."
The manual contains some new information about the topic of each section and questions that are specifically intended for people receiving hemodialysis, family and friends, or health care practitioners. For example, a question for a health care practitioner in the manual section "Grieving the Losses and Embracing the Changes" is "How do you explore and support Aboriginal people's feelings when they learn they will/may go on hemodialysis?" There is space in the manual to write down answers to the questions. The person can share his/her responses with others. For example, family members might share the answer to the question, "What scares me about hemodialysis?" with a health care practitioner who might be able to offer some information to alleviate their fears.
Lastly, the toolkit contains a calendar diary. This is a calendar that can be used to keep track of appointments or tests. It can also be used to mark down questions or thoughts to discuss with family or a health care practitioner at a later date. The calendar/diary contains quotes from our interviews with Elders, as inspirational thoughts. For example, the quote for the month of January is, "You have to find a balance between seeing dialysis as a burden, and seeing it as an opportunity to feel stronger."
The toolkit that was developed in this research contributes in a unique way to provide education and support of Aboriginal people receiving dialysis, as well as providing such education and support to their friends, families and health care professional caregivers. It is unique in that it has been designed primarily by Aboriginal people in consultation with experts in Aboriginal health and dialysis. We know of no other intervention that addresses the needs of Aboriginal people in such a culturally relevant and comprehensive way. However, in the future, the usability and relevance of the toolkit should be evaluated by all stakeholders, including Aboriginal people on dialysis, their friends and family, and health care practitioners.
The toolkit also addresses an important issue--the need to stage information so that it is not overwhelming to the patient. As we discovered, providing all the information that someone on dialysis may need to know at the beginning of their experience may actually be overwhelming and counterproductive for some people. This, however, is not necessarily unique to Aboriginal people. There is at least anecdotal evidence that the issue is shared by non-Aboriginal people beginning dialysis. Future research should examine the differences in education and support needs, as people experience dialysis over time.
In both the first section of the manual and the first DVD of the toolkit, people with kidney disease are offered the control to determine when they are ready for the information that is available in the toolkit. For example, they may choose to wait to review the DVD on grieving the losses because they are not yet ready to acknowledge the negative aspects of the dialysis experience. The findings of this research hold several implications for dialysis practitioners, particularly in the need to assess Aboriginal patients' readiness for information and the value of involving Aboriginal people to develop strategies and approaches to improve their care. In addition, the research highlights the importance of storytelling, not assuming that all Aboriginal people hold similar views, and providing both auditory/visual and written ways of presenting health information to Aboriginal people. Perhaps most importantly, the research validates the need to involve family and friends, as well as health care practitioners, in the teaching and learning that is essential to Aboriginal people who are beginning dialysis.
At the conclusion of the research, we invited members of the community to attend an "Appreciation Event" in which we reviewed the research, displayed the toolkit, and thanked them for their participation and support. Each of the 48 attendees received a copy of the toolkit. The feedback from community members and the consultants on the project has been strongly positive. One family member told us, "I am overcome to see First Nation people showcased this way. It is the first time I have seen anything that is so meaningful to me and my family." A health care provider in the community indicated, "It (the toolkit) is spectacular. It shows how carefully you have all thought about what First Nation people need." The members of the research team acknowledged that they have developed increased awareness and insight regarding the experience of Aboriginal people who are required to leave their rural community to undergo dialysis in the city. At present, the community is investigating funding opportunities to make the toolkit available to Aboriginal people across Canada.
There is an identified need for more effective linkages between urban health centres and rural communities in regard to Aboriginal health. To date, such recommendations represent little more than a wish list, as there are few definitive directions for interventions to achieve such aims. It is clear, however, that interventions that are directed at the level of all stakeholders (individual, family, community, urban practitioners) are more likely to be successful at resolving rural-urban disparities than those focused at the level of the individual, or only one stakeholder. The research described above has addressed this need by developing a toolkit that is culturally relevant and promotes dialogue and understanding between rural Aboriginal people on dialysis, their significant others, and health care practitioners in urban dialysis units. As such, the toolkit represents a pioneer effort, one that will be meaningful and beneficial to many Aboriginal people receiving dialysis across Canada.
By Barbara L. Paterson, RN, PhD, Lee Ann Sock, BSN, Denis LeBlanc, MSW, PhD cand., and Joan Brewer, RN, MEd
Barbara L. Paterson, RN, PhD, Professor & Tier 1 Canada Research Chair in Chronic Illness, University of New Brunswick Faculty of Nursing Fredericton, NB.
Lee Ann Sock, BSN, Supervisor Home & Community Care, Elsipogtog Health & Wellness Centre, Elsipogtog First Nation, NB.
Denis LeBlanc, MSW, PhD cand., University of New Brunswick, Fredericton, NB.
Joan Brewer, RN MEd, Research Assistant, University of New Brunswick Faculty of Nursing, Fredericton, NB.
Address correspondence to: Barbara L. Paterson, RN, PhD, Professor & Tier 1 Canada Research Chair in Chronic Illness, University of New Brunswick Faculty of Nursing, PO Box 4400, Fredericton, NB E3B 2A5. E-mail: email@example.com
Submitted for publication: October 7, 2009.
Accepted for publication in revised form: January 31, 2010.
The authors gratefully acknowledge funding received from the Kidney Foundation of Canada for the research, as well as the participation and support of the people of Elsipogtog First Nation.
Note from the editor: This article was awarded the 2009 CANNT Manuscript Award at CANNT 2009 in Saint John, New Brunswick.
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