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Decisional needs assessment to help patients with advanced chronic kidney disease make better dialysis choices.

Patients with advanced chronic kidney disease (CKD) who are nearing or at the end stage of this terminal illness are required to make complex decisions about renal replacement therapies (RRTs) (Registered Nurses' Association of Ontario, 2009). To continue to survive or while waiting for a kidney transplant, patients are required to choose between hemodialysis (HD) and peritoneal dialysis (PD) and consider their various forms (Levin et al., 2008). Because there is little scientific evidence to indicate whether one type is superior, international clinical practice guidelines (CPGs) recommend allowing patients to choose according to preference (Levin et al., 2008; National Institute for Health and Clinical Excellence [NICE], 2011; National Kidney Foundation [NKF], 2015).

The decision is very difficult. Although they differ in application, both types of dialysis exert a major impact on patients' personal, family, and social lives (Schatell, 2015). To overcome this challenge, CPGs for advanced CKD state that patients and their family caregivers should be adequately prepared to make informed decisions (Levin et al., 2008; NICE, 2011; NKF, 2015). This preparation should begin early (Saggi et al., 2012; Tuso, 2013) to avoid the requirement for urgent initiation of dialysis in hospital, which is associated with higher rates of morbidity and mortality in the first months of dialysis (Collins, Foley, Gilbertson, & Chen, 2015). With this in mind, advanced CKD clinics have designed structured education programs, which are implemented during the pre-dialysis period to prepare patients to choose a dialysis modality. The results of a systematic review suggested that these programs could improve patients' knowledge, decision-making self-efficacy, and intention to initiate home-based dialysis. However, the quality of studies in the review was often poor (van den Bosch, Warren, & Rutherford, 2015).

The process of choosing a dialysis modality often involves decisional conflict (Liebman, Bushinsky, Dolan, & Veazie, 2012; Maaroufi et al., 2013). The North American Nursing Diagnosis Association defined decisional conflict as intrapersonal uncertainty regarding the course of action when competing alternatives are associated with risk, loss, regret, or challenge to personal values (Carrolljohnson, & Paquette, 1992). However, this uncertainty can be reduced by providing support via shared decision-making (O'Connor, Stacey, & Boland 2015; Towle & Godolphin, 1999).

Shared decision-making is a collaborative process through which patients and health professionals exchange information and discuss available options to reach a treatment decision (Charles, Gafni, & Whelan, 1997; Makoul & dayman, 2006; Towle & Godolphin, 1999). To structure this process, the Ottawa Decision Support Framework (ODSF) has often been used to develop decision support interventions designed to guide patients through health decisions (Coulter et al., 2013). In accordance with the theories on which it is based (expectancy-value decisionmaking, decisional conflict, social support, and self-efficacy), the ODSF asserts that unresolved decisional needs exert an adverse effect on decision outcomes. Decision support tailored to patients' needs could improve outcomes, such as informed values-based decisions, delay and continuance of chosen options, regret and blame, and appropriate use of services (O'Connor et al., 2015). Decision support interventions in the form of counseling decision aids, and/or decision coaching include clarifying decision and needs, providing facts and information regarding probabilities, clarifying personal values, enhancing support and resources, and monitoring and facilitating progress (Ottawa Hospital Research Institute, 2010).

The ODSF defined decisional needs "as a gap between what is and what should be" (O'Connor et al., 2015, p. 6). Decisional needs are classified into three categories: a) decision perceptions and characteristics, b) support and resources needed to make a decision, and c) the personal and clinical characteristics of participants in the decision. These categories are interrelated, and needs are presented as deficits (see Figure 1).

Previous research (see last column in Table 1) provides clues regarding decisional needs of patients with advanced CKD, but they have never been studied specifically. Moreover, there are inconsistencies in patients' decisional needs have been found in relation to personal uncertainty about the treatment decision support by patients on dialysis and content and amount of information. The studies were retrospective, sometimes months after the decision was made. Many were poorly designed, which may explain the inconsistency of findings. Other studies lacked details (for example, omission of providing a definition of the peer helper). To be able to develop effective decision support interventions, a decisional needs assessment was required closer to the time of decision-making.

This article summarizes a qualitative descriptive study guided by the ODSF that explored the decisional needs of patients with advanced CKD and their loved ones, as well as others involved in the decision-making process.

Method

Using the ODSF as a framework, this qualitative study was based on the method proposed by Sandelowski (2000), that described the phenomenon of interest holistically in a given population.

Setting and Participant Selection

The study was conducted between October 2011 and May 2012 at the nephrology center of the hospital affiliated with the French Canadian university where the first author has worked as a clinical nurse specialist for 12 years. The center provides HD and PD. HD can be done at the hospital, in a dialysis center that is not part of a hospital, or at home. For PD, continuous ambulatory or automated are the modalities available. The center also runs a pre-dialysis clinic that provides, among other services, small group education sessions in which nurses and nephrologists are key practitioners, with contributions from other HD and PD nurses, a nutritionist, a pharmacist, a social worker, and peer helpers (HD, PD, HDD). Family caregivers are invited to attend these sessions.

Key informants over age 18 years and in a key position that allows them to understand the needs associated with the decision to be made (Jacobsen, O'Connor, & Stacey, 2013) were recruited from the center and assigned to either a patient group or a group supporting patients' decision-making. The first group consisted of a) patients on dialysis who had just chosen a dialysis modality (representing various forms); b) patients with dialysis access via an arteriovenous fistula or PD catheter who had yet to begin dialysis; and c) patients on dialysis who had experienced different dialysis modalities. Two participants were required for each dialysis modality. A purposive and sequential sampling technique was used to maximize differences, collect a wide range of information, and ensure the highest level of informant diversity (Patton, 1990). Patients were excluded from the study if they were not cognitively capable of taking part in an interview, did not speak French, or had chosen conservative management.

The second group consisted of people supporting patients' decision-making. Principally, the intervention occurred via small group education sessions and included nurses, nephrologists, a social worker, peer helpers (identified by the pre-dialysis team as having good communication skills) acting as peer supporters (but not formally trained for this role) in helping patients required to make treatment-related decisions, and caregivers. We also recruited patients on dialysis from a patients' association via convenience sampling.

Data Collection

Two strategies were used to collect data: semi-structured individual interviews (Jacobsen et al., 2013) and a focus group (Morgan, 1988). The first author, who had 10 years of experience as an interviewer, conducted all data collection using validated interview guides based on the ODSF (Jacobsen et al., 2013): one version for patients, and one version for professionals and peer helpers. The guides elicited decisional needs using open-ended questions and structured probes or questions based on the ODSF (see Table 2). The guides were pre-tested by a patient on dialysis and the pre-dialysis nurse coordinator at the clinic. Additional sociodemographic and clinical questions were included to demonstrate the diversity and contrast in the sample. Data were collected over a three-month period.

We conducted individual interviews with patients on dialysis, peer helper and his wife, and patient association members; nephrologists; and a social worker. All interviews were held at the dialysis unit or interviewees' homes or workplaces. Each interview lasted 60 to 90 minutes. Interviews with nephrologists and the social worker were conducted in the workplace and lasted 45 to 60 minutes. The first author then ran a 75minute focus group session with nurses and supervisors in the workplace.

All individual interviews and the focus group session were recorded, transcribed verbatim for analysis, and interpreted without regard to source or data collection strategy. Transcript content was analyzed using a deductive process and the ODSF. When participants' responses could not be categorized according to ODSF concepts, data were analyzed inductively using similarities and differences rules (Lincoln & Cuba, 1985; Skrtic, Guba, & Knowlton, 1985). The categories were interconnected and relationships between them explored. The co-authors validated the coding process and summarized the data separately. Summaries were compared to reach a consensus on the principal themes regarding decisional needs. Data management was performed using Microsoft[R] Excel and Word (Office 2007). In the analysis stage, the authors extended their exploration using modeling and organized the data to provide the best possible portrait of reality in accordance with analysis methods advocated by Lincoln and Guba (1985), and Skrtic et al. (1985).

Procedure and Ethics

After receiving approval from both the university and the setting ethics review board, we recruited participants via an explanatory letter delivered in different ways for different candidate groups. The letter invited potential participants to express their interest in the study. With their agreement, the first author met with them at a place and time of their choice to explain the project, answer their questions, and ask them to sign a consent form. All participants provided informed consent. The first author then gathered sociodemographic data and conducted individual and focus group interviews.

Results

Results of the study are presented in three parts: participant characteristics, decisional needs, and the evolution of decisional needs through the decision-making journey.

Participant Characteristics

Seventeen patients on dialysis agreed to be included in the first group of key informants: 10 men and 7 women aged 20 to 84 years, most of whom were married. We achieved the desired level of diversity (see Table 3). Fifteen people agreed to be included in the second group of key informants: one peer helper (HD) and his spouse, and one patient from a patient advocacy organization, five nephrologists, and one social worker. The focus group included a pre-dialysis clinic nurse, three nurses actively participating in small group education sessions, and their head nurse. All health professionals had lengthy experience in caring for either predialysis or patients on dialysis (see Table 3).

Decisional Needs

Patients with advanced CKD who were required to choose a dialysis modality were confronted with decisional needs matching those described in the ODSF, in addition to a few not captured by the ODSF or fully developed. Table 1 lists the ODSF's categories for decisional needs, illustrates each category with participant statements, and cites studies to support each category; these studies are considered in greater depth in the Discussion section in this article. We describe study participants using the following codes in this article: the first letter identifies the participant as either a patient (P), a doctor/nephrologist (D), or a nurse (N); the number next to that letter is the participant's ID number; the second letter specifies the participant's sex; and the parentheses specify the type(s) of dialysis experienced by the patient. Of the listed needs, participants attached particular weight to specific needs (items in italics in Table 1), which are presented in detail below.

Concerning needs in the decision perceptions and characteristics category, participants emphasized that the difficult decision was often the one involving whether they should embark on dialysis. They also highlighted the impact of the constraints of decision-making in chronic care, which result from delayed decision timing. Results revealed emergent needs that are not fully developed in the ODSF or included in Figure 1. Participants initially identified the unique characteristic of the complex decision as the context in which one needs to consider options while experiencing difficulty accepting dialysis. Participants highlighted the following as factors that could leave patients unreceptive to progress in decisionmaking because of issues involving emotion: lack of readiness or rejection of information because of fear of dialysis; inability to progress towards acceptance of dialysis, amplified by powerful emotions; and poor timing of information provision, evoking anxiety. Moreover, participants maintained that emotions interfered with decision-making during information acquisition because of fear or anxiety-inducing representations of dialysis.

Regarding the needs in the support and resources category, participants emphasized the impact of unsolicited negative opinions and stories from patients on dialysis who they encountered in the waiting room of the dialysis unit. They also revealed two types of pressure from nephrologists: acceleration of the preparatory process when patients chose home-based dialysis, and the expression of disappointment when patients refused home-based dialysis. Participants also outlined the negative impact of a lack of follow up and emotional support from professionals and idealized or unrealistic testimonials from peer helpers (HD, PD) on decision-making. Several participants lamented the lack of follow up from staff (nurses), poor decision support, and nursing shortages. Results also showed that an overload of information delivered in condensed form, the presence of inaccurate information, and inaccessibility of accurate information proposed a challenge to information assimilation. In addition, participants indicated that a nursing shortage interfered with decision-making because of the reduction in time spent developing educational material or supporting patients in decision-making.

With regard to personal and clinical characteristics, participants stated that the insidious nature of CKD made it difficult to appreciate the illness and need for dialysis. They also revealed a complex set of characteristics similar to those of frail elderly individuals. Moreover, undiagnosed mild cognitive impairment was considered as detrimental to decisionmaking as diagnosed impairment was.

In summary, results revealed multiple decisional needs interfering with dialysis choice. These needs could be present from the beginning of decision-making or arise at any point throughout the process. We now discuss the journey of decisional needs identified by participants.

Evolving Decisional Needs Through the Decision-Making Journey

Results indicated that decisional needs evolved during the decisionmaking process. These needs can be illustrated as a five-stage journey that begins when nephrologists tell patients that dialysis is required for survival and ends when patients confirm the dialysis modality chosen after having experienced it (see Figure 2). At each stage, patients engage in one or more of several activities (vertical arrows) before moving on to the subsequent next stage (horizontal arrows). There are three major types of activity: emotional (managing emotions evoked by the decision), cognitive (managing information regarding advanced CKD and the features of each option), and social (seeking help from other key people and mobilizing internal and external resources).

Stage 1. Patients need to progress towards acceptance of dialysis with help from family and a trusted care team. This stage begins when nephrologists announce that patients have reached the end stage of the illness. Patients associated the end stage with a life of uncertainty; restrictive treatments, such as dialysis; and possible death. Faced with the unfamiliar and threatening world of dialysis, patients felt anxious, afraid, distressed, overwhelmed, and violated. "I didn't know what dialysis was; it was scary, frightening. It was as if it had taken me, then it constricted me, and then I was finished" (P11M [arte-riovenous fistula]). A common first reaction to this threat, as expressed by participants, was to reject the offer of dialysis. This was the most delicate stage because "he [the patient] has to think about whether he wants dialysis or not, which comes down to, 'Do I want to live?"' (D3F). This requires engagement in emotional, cognitive, and social activities in coping with the situation. Participants in the patient group stated that progressing towards acceptance of dialysis was easier when there was a trust-based partnership with the pre-dialysis team, with the latter's "support being very important" (P13M [APD]). By choosing to live with dialysis, patients display the basic minimum level of acceptance required to want information about the dialysis modalities available. One participant stated that she had to "stop feeling sorry" for herself before she could accept dialysis (P3F [HD + PD]). Being "prepared" for eventual dialysis treatment and feeling "supported" by family helped patients complete this task (P10M). According to participants in the professional group, involving family caregivers early in the process was of benefit to the pre-dialysis team because loved ones could provide information that would facilitate decision-making. They could also help patients learn about the pros and cons of each option throughout the journey. "They [patients] cannot understand everything; they need a family caregiver to help them" (D5M). At the end of this stage, patients had become receptive to information.

Stage 2. Patients need to receive information by participating in a formal educational program, in addition to doing other things. This stage involves patients and family caregivers taking part in a structured pre-dialysis education program. Most participants stated that group education sessions fulfilled their information needs and those of family caregivers and reduced their apprehension. Information must be presented concretely, illustrating effects on daily life and the advantages and disadvantages of each dialysis modality. "All options must be presented" as honestly as possible, "without omitting their drawbacks," so patients can make a "well-advised" decision (P14M [patient on HD]). However, the requirements for discussion concerning risk differed between participants; some required a detailed description, others felt that only the most common risks should be described, and some required no such description. Further, they stated that professionals' role involved talking about risk and that the timing of discussion was crucial. Several participants stated that credible and realistic testimonials from peer helpers (HD, PD) helped them to debate their options: "You need the [peer helper] patients' testimonials to help you lean towards one side or the other, or to see positive and negative aspects you hadn't considered because you haven't lived them" (P14M).

According to several participants, group sessions maximized discussion and exposed patients to numerous approaches to choosing a dialysis modality. At the end of the stage, patients were informed, reassured, and able to deliberate.

Stage 3. Patients need to take some time for personal reflection. At this stage, patients need to deliberate iteratively on their own to consider the pros and cons of HD, PD, and HHD, and assess their resources. This process elicits powerful emotions. Patients could proceed via a process of elimination; for example, they could exclude options on the basis of the negative impact on their physical appearance, quality of life, or family life. As described by one participant: "In my mind, I was going, 'Okay, PD: I'll have a belly, so that's a no. I'll have to do treatments, and everything has to be squeaky clean.' So I'm telling myself, 'no'" (P1M, SHDU + HHD).

Another stated: "If you opt for PD or the machine at home [HHD], you're placing the burden on her [the spouse]. You have to talk to her about it. Also, will she agree to play that role? Because she has to support you absolutely" (P14M [peer helper, HD]).

Participants agreed that they attached less importance to the risks associated with each dialysis modality relative to that attached to other factors. Some even adopted a fatalistic view, as described by P9M (SHDU), who stated: "All of them [dialysis modality] have risks." Others stated that they simply "trust" medicine and "don't think about that" (P8M [PD catheter]).

Patients were also required to consider their personal resources, which P6F (PD + in-center HD) described as follows: "Am I capable of doing PD? Do I have the time and motivation to do this, every day?" Because resources can change, this leads to an iterative process, as described by another participant: "I have been following her [the patient] for four to five years. She is at Stage 4. Her husband died last year, and that changed everything.. .now she sees herself as being stuck, and we have to re-evaluate what she wants" (N1F).

These deliberations generate strong emotions because patients are required to work on themselves to imagine living comfortably with dialysis. For instance, P15M (SHDU) stated: "I have to work on my mental condition myself." Patients are then able to communicate their preferred or intended choice to others.

Stage 4. Patients need to seek the opinions and support of others. At this stage, patients require the opinions and support of a number of people to validate their intended or preferred choices, make those choices known, and increase their confidence in their decisions. One participant, N3F, stated: "I think patients very rarely make the decision on their own!" Participants valued nephrologists' opinions because of their medical knowledge. Nurses were also appreciated because they explained things in laypeople's terms and offered emotional support. Family members' opinions and support were also sought. Peer helpers were particularly valued for their experiential knowledge and motivational impact with regard to living a functional life with dialysis; as PIM (HD + HHD) explained: "I was convinced, completely, royally, by the [peer helper] patient. After that, I was like, 'Let's go; I'm in.'" As N4F explained, in this context, patients will choose "the best of the worst, and then choose the treatment modality best suited to [their] situation."

Occasionally, patients faced opinions from patients on dialysis who disagreed with their own choices:

There was this lady in the waiting room, at the dialysis center. She was in HD. She said, "Why did you go and do that?" I said, "Why do you say that?" And she said, 'You're going to have all kinds of problems with PD ..." P16F (HD +APD)

Participants agreed that in some circumstances, patients leave the decision to nephrologists or family decision-makers. "Some patients are clearly helpless: they can't choose. They're either extremely anxious, or they never had to make decisions for themselves in their life. I've had to make the decision myself for a few of them" (N1F). Regardless of others' influence, this stage culminated in a decision, and the chosen modality of dialysis was initiated.

Stage 5. Patients need to reevaluate their decisions following dialysis initiation. The journey of decisional needs concludes with an evaluation of patients' satisfaction after having experienced the chosen dialysis modality. At some point during the first few months of dialysis, patients assessed their satisfaction with their decisions, sometimes with the help of health professionals, to confirm their choices. Satisfied and confident patients would be consolidated in their choices. According to some participants in the patient group, patients were pleased when nephrologists congratulated them on their decision-making process; it "means a lot" for patients and their families, given the trust-based relationships between them (P2M [SHDU]). Patients who were dissatisfied and thinking about choosing a different dialysis modality would repeat the deliberation stage either alone or with help. As described by one participant: "I switched to HD because PD didn't fit my nomadic student lifestyle" (P6F [PD + HD]). Following emergency HD, another participant stated: "Then the doctor asked me, 'What is the most important thing in your life?' I said, 'Travelling!' She said, 'You need the cycler' [APD]. So I gathered some information, and I started training for PD" (P3F [HD + PD]).

Discussion

This study identified a more comprehensive set of decisional needs relative to those described in the ODSF. Moreover, we uncovered their evolution though a decisionmaking journey that involved a higher number of stages than previously identified. Further, we improved previous methods by examining needs close to the point of decision-making.

Overall, although retrospective in manner, our results confirmed that the decisional needs identified in previous studies involving patients with advanced CKD are relevant close to the point of decision-making and somewhat similar to those identified by patients with cancer when

choosing treatment methods (Mokaya, 2011).

Concerning decision perception and characteristics, results showed that patients with advanced CKD experienced increased levels of decisional conflict and emotional distress while choosing a dialysis modality. They appeared to experience a high level of uncertainty regarding the dialysis decision, strengthening the results reported by Winterbottom Bekker, Conner, and Mooney (2012). This suggests a need for a separate decision support intervention. Treatment choices in the context of a chronic condition offer a longer window of opportunity for making, revisiting, and reversing decisions, and shared decision-making researchers have reported this can delay decision-making (Montori, Gafni, & Charles, 2006), which is echoed in our results.

We identified new decisional needs that could enrich the ODSF. Some were reported in previous studies, while others add greater specificity. Our findings indicate that fear of dialysis and the absence of symptoms prior to the advanced stage of CKD necessitate expansion of the ODSF.

CKD symptoms are usually insidious and often confused with those of the primary disease. In addition, biological changes are so gradual that patients do not experience particular problems. This lack of symptoms is associated with the anodyne nature of the disease, and many patients defer preparation for choosing a dialysis modality (Erlang, Nielsen, Hansen, & Finderup, 2015; Greer et ah, 2015). Our results indicate that the absence of symptoms prevents patient engagement in decision-making in various ways, which is consistent with findings of previous studies (Prakash et al., 2015).

However, our results contribute to current understanding by highlighting the importance of preparing patients for formal education properly; otherwise, they become anxious and unreceptive to information and do not engage in decision-making. In addition, participants emphasized that patients experienced the inability to proceed towards acceptance of dialysis, and the resulting emotions served as a barrier to decision-making, which is widely acknowledged in the literature concerning choice of a dialysis modality (Andrew, 2001; Greer et al., 2015; Taylor & Combes, 2014). Emotions increase because of the reality of having to undergo dialysis to survive and the negative representations this evokes. Moreover, information acquisition can amplify emotion; Leventhal, Nerenz, and Steele (1984) reported that representations were in constant flux as individuals were exposed to new experiences and information.

In light of these findings, it is clear that choosing a dialysis modality constitutes a complex decision because patients have no choice but to consider their options while experiencing difficulty accepting dialysis. Therefore, as posited by some scientists in the shared decision-making field (Legare & Thompson-Leduc, 2014), the emotional dimension of decision-making should be integrated into shared decision-making models. Further, decision support interventions for patients with advanced CKD should include specific strategies to mitigate emotion. In addition, interventions designed to increase awareness of the disease, which would increase receptivity to information and facilitate progress in choosing a dialysis modality, are required.

Regarding the support and resources category, our results extend the findings of previous studies examining social pressure in choosing a dialysis modality (Bamieh et al., 2014; Walker et al. 2016) by revealing the mechanisms via which professionals apply certain types of pressure in the decision-making process. Several participants identified the consequences of an abundance of information (formal education sessions) as cognitive and emotional overload, which is consistent with Michaud and Loiselle's (2003) findings and was acknowledged in the CPGs (Registered Nurses' Association of Ontario, 2009). According to an international panel of experts, patients with advanced CKD should receive cognitive follow up beyond the point at which they choose a treatment modality to meet standard quality requirements for pre-dialysis programs (Isnard Bagnis et al., 2014). The participants in the current study, particularly those in the patient group, reported a lack of follow up after educational sessions designed to motivate patients to reach and implement a final decision. To our knowledge, this finding, which illustrates patients' perspectives, has not been reported previously and highlights the context of decision-making in chronic care.

Taylor and Combes (2014) reported that patients experienced a lack of emotional support from professionals when making decisions, which is consistent with our findings. While professionals are aware of the emotional turmoil involved in the decision, they feel too helpless

to intervene (Taylor & Combes, 2014). Moreover, it is almost impossible for patients to avoid emotional shock entirely when they are advised that they require dialysis (Andrew, 2001). Further, as reported by Loosman, Rottier, Honig, and Siegert (2015), depression is common in patients with advanced CKD. This suggests training professionals in the use of strategies to minimize emotional decision-making is mandatory.

Patients with CKD consider peer support valuable in helping them adjust to their illness and access practical information based on lived experience of treatment (Hughes, Wood, & Smith, 2009). However, some researchers (Winterbottom et al., 2012) have described the potentially negative impact of exposure to a large amount of information from patients on dialysis in the waiting room, on the unit, and in formal education sessions, as this could lead to bias and interfere with information assimilation and decision-making. In the current study, patients reported increased anxiety and fear resulting from the negative opinions and stories of patients on dialysis in waiting rooms. Consequently, as posited by Hughes et al. (2009), previous research has highlighted that patients on dialysis need training before they can provide adequate support to other patients. Nevertheless, our results indicated that peer helpers appeared to be of paramount importance to patients with advanced CKD in choosing a dialysis modality, reinforcing the results of previous studies (Barnieh et al., 2014; Griva Li, Lai, Choong, & Foo, 2013; Harwood & Clark, 2014; Hughes et al., 2009; Morton, Tong, Howard, Snelling, & Webster, 2010; Taylor, Gutteridge, & Willis, 2016). Therefore, they should receive special training in decision-support intervention to help patients with CKD to choose a dialysis modality, as occurs in another domain (cancer) (Belkora et al., 2013). Regarding support from patients on dialysis, our results extend those of previous studies examining the mechanisms contributing to inadequate support (Hughes et al., 2009; Taylor et al., 2016).

The provision of adequate informational resources to patients with advanced CKD appears complex. Some patients reported being overloaded with information, while others reported a lack of information. Michaud and Loiselle (2003) described this phenomenon as the paradox of the experience of receiving pre-dialysis information for patients with advanced CKD, for whom this appeared both rich and poor and both simple and complex. This should be considered when supporting patients in choosing a dialysis modality.

Results also showed that exposure to inaccurate information was detrimental and led to misconceptions regarding RRT, which was consistent with the results of Griva et al. (2013). Misunderstanding regarding the disease and RRT was compounded by poor access to accurate information, which was also reported by Bamieh et al. (2014). Educational science suggests that the need to rectify misunderstanding or misconception increases difficulty in learning (Ecker, Swire, & Lewandowsky, 2014). Misconception can be reduced, and informed decisions can be made with better access to accurate information regarding dialysis options, including descriptions of RRT, efficacy, risk, potential benefits, and side effects, and the potential need to switch to HD after a few years on PD (NICE, 2011). Although there is broad consensus regarding the need to provide patients with detailed information concerning the risks (complications) of RRT, our results showed a mixed view. Many participants were in favor of limiting the information received to that related to dialysis access (HD, PD). Further research is required to understand how to help patients hold realistic expectations of RRT.

Further, the challenge of timeliness is crucial to information provision (Morton et al, 2010). CPGs recommend providing information six to 12 months in advance of the decision to allow patients time to absorb it while they are asymptomatic and less likely to be cognitively impaired (Saggi et al., 2012). In contrast, professionals are hesitant to provide information too soon for fear of unnecessarily raising patients' concerns because some do not progress to kidney failure. Fortnum, Grennan, and Smolonogov (2015) showed that patients' levels of worry increased following a shared decision-making decision support intervention. In our experience, inaccessibility of accurate information is caused by a delay between referral to and receipt of the formal educational pre-dialysis program. During this time, some patients and their families seek advice without knowing how to access accurate information and are simultaneously exposed to the biased opinions of others, which compromise information assimilation and decision-making.

Results revealed another challenge facing professionals if mild cognitive impairment is suspected but undiagnosed when preparing frail elderly patients with advanced CKD to choose a dialysis modality. In our experience, this situation is common because of a lack of expertise in nurses assessing the cognitive state of patients and a nursing shortage preventing the provision of this service at the pre-dialysis clinic. However, as emphasized in previous research, a different approach to decision support should be implemented for those with a diagnosis of cognitive impairment (Berger & Hedayati, 2012). This should be considered in designing decision support interventions.

With respect to evolving decisional needs in the decision-making process, they are illustrated as a journey involving emotional, cognitive, and social activities that are completed at each stage before proceeding to the next. This iterative journey can be summarized as five transitional stages: a) patients need to progress towards acceptance of dialysis, with help from loved ones and a trusted care team; b) patients need to receive information by participating in a formal education program, in addition to doing other things; c) patients need to take some time for personal reflection; d) patients need to seek the opinions and support of others; and e) patients need to re-evaluate their decisions following dialysis initiation. Compared to the process described by Andrew (2001), this journey provided a rich and complete description of the path leading to confirmation of the selected dialysis modality after having experienced it. Participants stated that patients with advanced CKD should be accompanied (cognitively, emotionally, and socially) on the journey towards acceptance of their future lives with dialysis before fully engaging in decision-making, which extends the results of Andrew's (2001) study.

Results also highlighted the need for trusting relationships between healthcare providers, patients, and caregivers in decision-making, which is consistent with the findings of previous studies involving patients with advanced CKD and kidney failure (Barnieh et al., 2014; Walker et al., 2016). As suggested by Montori et al. (2006) in the context of chronic disease, an additional component of the shared decision-making approach is necessary and includes the need to emphasize real, ongoing partnerships between clinical teams (not just doctors) and patients in making this difficult decision. Many studies highlight the need for family members' cognitive collaboration and emotional support during the decision-making process (de Rosenroll, Higuchi, Dutton, Murray, & Stacey, 2013; Griva et al., 2013; Harwood & Clark, 2012; Sheu et al., 2012), and our results are consistent with this. In view of these results, a multiphase decision support intervention designed to meet the decisional needs of patients with advanced CKD and their family caregivers is warranted.

This study had both strengths and weaknesses. Rigor was maintained via attention to the trustworthiness criteria described by Lincoln and Cuba (1985). Credibility was ensured by the first author's extensive experience with patients and in the field; triangulation of data sources, methods, and researchers; and regular discussion between the first author and coauthors (thesis supervisors) throughout the research process. However, member checking was not performed; this could weaken scientific rigor at a credibility level. Nevertheless, reformulation was used during interviews, to provide an opportunity for patients to clarify or complete information regarding their experiences. We ensured dependability by recording and transcribing interviews and co-coding and co-analyzing raw data to ensure stability, consistency, accuracy, and likelihood. To ensure confirmability, the first author kept a reflective journal and audit trails, which were examined by the co-authors. A rich description of the study context, participants, data collection and analysis processes, and qualitative results supported by selected quotes from participants allowed judgment for transferability. The study was somewhat limited by a lack of patient diversity with regard to race, ethnicity, and language; focus on participants from a single center in the pre-dialysis stage or undergoing RRT; and the limited perspective of family caregivers. Further research should include perceptions of family caregivers of patients with advanced CKD or undergoing dialysis, non-Caucasian patients, patients from different cultures, and very old and frail patients to increase credibility of the study.

Implications for Practice

The study has important implications for practice. A solid knowledge of the decisional needs of patients with advanced CKD and how they could impinge on the choice of dialysis modalities would allow nurses to provide decision support tailored to patients' needs and promotes their participation in decision-making. Our suggestions for nursing practitioners include: a) be aware of the many decisional needs that patients and family caregivers could be managing because the accumulation of these needs makes the decision critical; b) think about those decisional needs during collection of data from patients with advanced CKD who are required to choose a dialysis modality; and c) perform periodical assessment of the decisional needs of patients and their families throughout the journey towards choosing a dialysis modality.

Although many studies have explored patients' decisional needs using a decision support framework (Ottawa Hospital Research Institute, 2010), our study filled a gap in the research by focusing on patients with advanced CKD. Most importantly, the anticipation of decisional needs via the decision-making journey will guide the next stage of this research, which will focus on the development and evaluation of a decision support intervention for patients with advanced CKD and their family caregivers.

References

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Statement of Disclosure: The authors reported no actual or potential conflict of interest in relation to this continuing nursing education activity.

Note: The Learning Outcome, additional statements of disclosure, and instructions for CNE evaluation can be found on page 478.

Marie-Chantal Loiselle, MSN, RN, is a Professor and Doctoral Student, School of Nursing Sciences, Faculty of Medicine and Health Sciences, University of Sherbrooke, Longueuil, Canada.

Cecile Michaud, PhD, RN, is a Full Professor, School of Nursing Sciences, Faculty of Medicine and Health Sciences, University of Sherbrooke, Longueuil, Canada.

Annette O'Connor, PhD, is an Emeritus Professor Faculty of Health Sciences, University of Ottawa, Ottawa, Canada.

Acknowledgments: The development of this study was supported by a doctoral training grant from the Ministere de l'Education, du Loisir et du Sport du Quebec (Ministry of Education, Leisure and Sports of Quebec), the Quebec Interuniversity Nursing Intervention Research Group (GRIISIQ), the Research funds from University of Sherbrooke, and the GRAPPE research fund of the Charles LeMoyne Hospital.

Table 1
Decisional Needs in Choosing a Dialysis Method and
Previous Research Supporting the Results

 Sample Quotes from            Need            Previous Research
    Participants                                 Supporting the
                                                    Results

Needs In ODSF:
Decision Perception
and Characteristics

"Yes, it is scary,     Decisional conflict    Liebman et al.,
and I'm just           with:                  2012; Maaroufi et
thinking about this    Dialysis modality      al., 2013; Prakash
all the time           decision               et al., 2015;
[dialysis modality                            Winterbottom et al.,
decision]."                                   2012
P1M (SHDU + HHD)

"It starts with,       Dialysis decision#
'I'm I going to
take dialysis?'
Until the last
minute [emergency
start], I refused."
P3M (HD + APD)

"When [the nurse]      Inadequate knowledge   Greer et al., 2015;
meets patients [for    assimilation from      Griva et al., 2013
the first time],       previous
patients have heard    misconceptions
all sorts of things,
they have surfed the
Internet ... so they
come in with
preconceptions or
often false
information ... It's
hard because we
start off with a
disadvantage. We
have to rid them of
all that, and it's
not easy." N2F

"In my mind, more      Unrealistic            Knowledge in
people die with        expectations HD is     addition to the
hemodialysis           less efficient than    findings of this
compared to PD."       PD                     study: Stringer &
P12F (PD catheter)                            Baharani, 2012

"People often ask me   Unclear values         Barnieh et al., 2014
if they made the       Questions fit
right decision.        between selected
 'Have I selected      option and features
the best dialysis      that matter most to
for me?' They ask us   them
which one is the
best one." N1F

"Emergency             Urgent decision        Sheu et al., 2012
situations are very    timing
different, and         Lack of time, as in
that's often the       an emergency
moment when the        dialysis situation,
decision is made       and it consequences
because we have to
start on
hemodialysis, and we
tell them they will
be able to
reconsider their
decision in a month
or two." D3F

"I started in an       Status quo decision-   Morton et al., 2010
emergency              making
situation ... and
once you start here,
in an outpatient
clinic with nurses
to help you and
everything is going
well, it's hard to
switch [to another
form of dialysis]."
P4M (SHDU)

"Patients don't        Delayed decision       Erlang et al., 2015;
accept ... having to   timing                 Greer et al., 2015
decide whether to      Long deadline to
consider dialysis,     prepare for decision
especially because     making in the
the preparation        context of a chronic
phase can start up     illness#
to a year before the
beginning [of
dialysis
treatments]. So they
often feel like a
year prior is very
early. It's like
saying it's
accepting the end
stage of this
illness one year in
advance. That's what
makes it difficult.
D2M

Emergent Needs Not Emphasized Adequately in ODSF: Decision
Perceptions and Characteristics

The important          Complex decision       Andrew, 2001; Greer
decision to make,      context                et al. , 2015;
I'll tell you          Difficulty accepting   Taylor &
squarely, for me, it   the chronic            Combes, 2014
is the acceptance of   condition and need
the disease [end       to consider options#
stage of CKD]. This
is the first thing
in choosing a type
of dialysis! It is
like anything it was
to accept [dialysis]
because even in pre-
dialysis, I did not
accept the disease.
It took me time to
accept it." P1M (HD
+ HHD)

"At first, I wasn't    Un receptive stage     Hughes, Mendelssohn,
interested at all in   of decision-making,    Tobe, McFarlane, &
any information        fear of dialysis       Mendelssohn, 2013
sessions to help me
make a decision."      Lack of
P3M (HD + APD)         receptiveness to
                       information or
                       refusal because of
                       fear of dialysis#

"Learning that I       Unreceptive stage of   Andrew, 2001;
would need dialysis    decision making        Taylor & Combes,
was so hard on me      because of lack of     2014
that I even thought    acceptance of the
about suicide! ... I   need for treatment
avoided making a
decision for a long    Inability to
time ..." P1M (HD +    progress towards
HHD)                   acceptance of
                       dialysis, amplified
                       by powerful
                       emotions#

"You have to be        Unreceptive stage of   Knowledge in
careful which          decision making        addition to the
patients you send to   because of anxiety     findings of these
small group                                   studies: Morton et
education sessions     Failure to progress    al., 2010; Prakash
because patients who   when information is    et al., 2015
go there reluctantly   provided at the
will remain anxious,   wrong time
I believe. They'll     (emotional state)#
say, 'I'm not
looking forward to
going,' and that
will just amplify
their anxiety." D1F

"Now you're really     Emotional effects of   Greer et al., 2015;
old, so bring on the   perceived treatment    Prakash et al., 2015
wheelchair, and it     option
won't be long;
that's how I was       Fear-or anxiety-
seeing it." P2M        evoking
(SHDU)                 representations of
                       dialysis#

"Dialysis, it's a
big thing; it's
scary." P1M (HDs +
HHD)

                       Emotional effects of   Fortnum et al., 2015
"After each [small     information
group education]       Information
session, I'd be        acquisition elicits
crying during the      emotions#
drive back home."
P6F (SHDU + APD)

Needs in the ODSF: Support and Resources

"There are two         Biased opinions of     Knowledge in
patients [in the       others                 addition to the
waiting room] who      Unsolicited negative   findings of these
really scare me        opinions/stories       studies: Kazley,
about the fistula--    from (untrained)       Johnson, Simpson,
things went really     patients on dialysis   Chavin, & Baliga,
wrong for them ...     in the waiting room#   2014; Winterbottom
they talk a lot                               et al., 2012
while they're
waiting, and they
clearly only talk
about the negative
aspects of it; they
never talk about the
positive side, so
this is something
that can influence
you." P6F (APD +
SHDU)

"Of course we don't    Biased opinions of     Harwood & Clark,
present every type     others                 2014
of dialysis            Ageism and personal
objectively because    bias from
we're aware that       nephrologists, based
we're biased from      on their medical
the start, except      judgment
perhaps for younger
patients. However,
with an older
patient, in our
minds, we may have
excluded PD for this
or that reason. So
we'll suggest, not
just suggest, we'll
clearly Insist on
hemodialysis because
we think it's a
better choice." D2M

"Sometimes, family     Social pressure to     Morton et al., 2010
members will exert     choose one option
pressure to exclude    Undue pressure from
PD because they        family members
don't want that In
their home." P7M
(APD)

"I started emergency   Perceived as a form    Knowledge in
hemodialysis, and      of social pressure     addition to the
then I wanted to       to choose one option   findings of these
learn about PD, and                           studies: Barnieh et
that's when the        Accelerated pace       al., 2014; Walker et
nephrologists didn't   when patients choose   al., 2016
leave me any time to   a home-based
have doubts. The       dialysis method#
doctor saw me three
times and said
hemodialysis was bad
for the heart, and
considering my young
age, I should opt
for PD." P6F (APD +
SHDU)

"When I decided to     Perceived as a form
stick with             of social pressure
hemodialysis, they     to choose one option
said, 'I'm very
disappointed; you      Disappointment if
had almost decided     patients turn down a
to go with PD.'" P8M   home-based dialysis
(SHDU)                 method#

"Something's missing   Lack of support        Unpublished results
here! [lack of         Decision-related
follow up] ... After   cognitive support
the [group             and follow-up from
education] sessions    professionals after
to motivate us, to     group sessions, from
help us make a         patients'
decision." P8M         perspectives#
(SHDU)

"Oh, I've seen lots    Lack of support        Sondrup, Copland,
of patients who tell   Decision-related       Black, & Trask,
me, after the pre-     emotional support      2011; Taylor &
dialysis group         and follow-up from     Combes, 2014
sessions, it shook     professionals after
them up. Dialysis is   group sessions
scary; they don't      * Nephrologists
want to make a         * Nurses#
decision, and they
don't have much
psychological
support." D5M

"He [experienced       Inadequate support     Knowledge in
dialysis patient       from experienced       addition to the
acting as peer         patients on dialysis   findings of these
helper] was                                   studies: Hughes et
explaining how at-                            al., 2009
home hemodialysis
works, and he said
it was the best
thing in the world
... He makes it seem
so wonderful; at
some point, you say
to yourself, 'Wait a
minute, hemodialysis
isn't that great.'"
P6F (SHDU + APD)

                       Unrealistic            Hughes et al., 2009,
"In my own case, I     testimony about life   Taylor et al., 2016
found it               with dialysis or
discouraging because   Testimony that is
all they said was      not adapted to the
they were able to      new patient's
get along as old       situation#
folks. There should
have been a young
patient instead of
just 75-year-olds or
workers. Because I
have a job." P9M
(APD)

"Yeah, he [brother-    Inadequate personal    Greer et al., 2015;
in-law] was doing      resources              Walker et al., 2015
hemodialysis, and he   Previous personal
was sick, sick,        experience with
sick, so I was         dialysis
thinking, 'Am I
going to end up like
him?' It makes
things harder." P17F
(PD catheter)

"Some people have      Inability to make a
never been able to     decision Lack of
make a decision, and   self-confidence
some don't feel
capable of doing it
at home." D5M

                       Inadequate             Fadem et al., 2011;
"If [patients] don't   informational          Morton et al., 2010;
have any               resources (amount)     Van Biesen, van der
information, they                             Veer, Murphey,
won't be able to       Lack of information    Loblova, & Davies,
make a decision        regarding dialysis     2014; Michaud &
because this           options#               Loiselle, 2003
[dialysis] is big."
P5F (continuous
ambulatory PD)

That thing [small      Information overload
group education        resulting from
session] doesn't go    condensed
on for a month; you    presentation#
retain a bit of it,
but you lose it
quickly." P11M
(arteriovenous
fistula)

"In terms of           Inadequate human       Knowledge in
individual meetings,   resources              addition to findings
we need more of        Lack of nurses to      of Fortnum, 2012
them, but they take    provide support for
time that we don't     patients#
have. We don't have
enough resources to
develop the training
[formal educational
program] because
that takes time."
N1F

"If they [the          Inadequate external
patients] don't have   resources              Harwood & Clark,
help at home, they     Lack of home-based     2014
rarely opt for at-     care
home dialysis." N5F

"Even when I've been   Special needs          Prakash et al., 2015
following [the         because of the
patient] for 10        insidious nature of
years, as long as      chronic kidney
they don't have        disease
symptoms, the          Lack of symptoms
disease isn't          pushes back the
real ... but when      realization of
you learn that your    chronic kidney
kidneys won't be       disease and the need
working anymore in a   for dialysis#
short while and that
you will need
dialysis, that's
when the disease
becomes real ... and
it's a very hard
thing to accept, and
it's very hard to
choose." N1F

"Someone who is        Special needs          Knowledge In
starting to have       because of             addition to findings
mild cognitive         cognitive health       of this study: Etgen
impairment, but        status                 Chonchol, Forstl, &
nobody has diagnosed                          Sander, 2012
it." D3F               Undiagnosed mild
                       cognitive
                       impairment#

"Being too toxic"      Special needs
N3F                    because of diagnosis
                       Uremia

"I've met people at    Special needs          Loosman, Rottier,
the meetings [group    because of             Honig, & Slegert,
education sessions]    emotional health       2015
who seemed too         status
anxious, nervous,
worried, and it        Anxiety and worry
struck me that they
were having a harder
time reaching a
decision." P3M
(SFIDU)

"Patients over 80      Special needs          Muthalagappan,
who have accumulated   because of age,        Johansson, Kong, &
multiple disorders     diagnoses, health      Brown, 2013; Schell
and the ones who are   status (physical,      & Cohen, 2014
also in a nursing      emotional,
home. They've gone     cognitive, and
through a lot          social functioning)
already. They don't
really know, and       Complex clinical
you're not sure If     portrait: very old
they still have some   and frail and living
quality of life, and   alone or in a
neither do they."      nursing home#
N4F

Notes: Italics indicate the decisional needs to which participants
gave particular weight. We described study participants using the
following codes: the first letter identifies the participant as
either a patient (P), a physician/nephrologist (D), or a nurse (N);
the number next to that letter is the participant's ID number; the
second letter specifies the participant's sex; and the parentheses
specify the dialysis method(s) experienced by the patient.

APD = automated peritoneal dialysis; HD = hemodialysis; HHD = home
hemodialysis; PD = peritoneal dialysis; SHDU = satellite
hemodialysis unit.

Notes: Italics indicate the decisional needs to which participants
gave particular weight indicated with #.

Table 2

Standardized Needs Assessment Questionnaire (Patient and
Practitioner Version) Adapted for Dialysis Method Choice

Open-ended questions elicit decisional needs in any category by
asking questions regarding patients' or practitioners' perceptions
of:

* Difficulties patients experience in deciding on a dialysis
modality.

* Factors contributing to patients' difficulties in
decision-making.

* Others who are usually/might be involved In decision-making.

* Patients' usual practices in decision-making.

* Barriers and facilitators to patients' access to/practitioners'
provision of decision support.

* Strategies to overcome barriers to access to/provision of
decision support.

Structured probes or questions elicit specific needs in the
following categories:

Decision Perceptions and Characteristics

* Decisional conflict (behavioral manifestations).

* Inadequate knowledge and unrealistic expectations (options,
potential benefits/advantages and risks/disadvantages).

Support and Resources

* The role of others in decision-making relative to that of
patients.

* Patients' usual decision-making practices related information
seeking, value clarification, access to support, and handling
pressure.

* Types of decision support that might be useful to patients
(counseling from specific health practitioners, discussion groups
from specific organizations or groups, and information materials,
including content, format, and source).

* Barriers and facilitators in accessing/providing decision
support.

* Potential strategies to overcome barriers to accessing/providing
decision support.

Personal and Clinical Characteristics

* Patient's age category, sex, duration of experience with chronic
kidney disease, and experience with treatment options.

* Practitioner's age category, sex, practice discipline, specialty,
location, and duration of practice experience.

Table 3
Participant Characteristics (First Group)

Participants   N    Male   Female   Age         Experience

Patients       17   10     7        M = 62.3    M = 6.03
                                    years       years
                                    (20 to      (0.58 to
                                    84 years)   19 years)

                                       HD + PD,
               Married or              PD + HD,
               Living with             HD + HHD,         Abdominal
Participants   Someone       HD   PD   PD + HHD    AVF   Catheter

Patients       16            3    4    6           2     2

Notes: AVF = arteriovenous fistula, HD = hemodialysis,
HHD = home hemodialysis, PD = peritoneal dialysis.

Table 4
Participant Characteristics (Second Group)

Participants    Number   Male   Female

Experienced       3       2       1
patients and
caregiver

Doctors           5       2       3

Other             1               1
professionals

Nurses            5               5

Supervisor        1               1

Participants     Age Category      Experience

Experienced     70 to 79 years       4 years
patients and
caregiver

Doctors         40 to 49 years    M = 12 years
                                 (3 to 25 years)

Other           20 to 29 years       1 year
professionals

Nurses          40 to 49 years   M = 12.6 years
                                 (7 to 20 years)

Supervisor
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Article Details
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Author:Loiselle, Mane-Chantal; Michaud, Cecile; O'Connor, Annette M.
Publication:Nephrology Nursing Journal
Article Type:Report
Date:Nov 1, 2016
Words:10746
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