Kidney transplant is the best option for the long-term health of patients with end-stage renal disease (ESRD). Kidneys may be transplanted either from a deceased donor or a living donor, with transplant from a living kidney donor (related, non-related, altruistic or kidney exchange) being the best option. Living kidney donation (LKD) yields improved graft, and patient survival compared with deceased donation is more likely to pre-empt the need for dialysis, and means that other patients without a suitable living donor have a better chance of acquiring a kidney from the deceased donor list.1 Patients who are listed on the deceased donor list (DDL), as well as having family or friends who can donate a living kidney, have two opportunities to receive kidneys. However, for those who are not eligible for inclusion on the DDL, their only option is to find a donor among their network of family and friends.

There are many barriers to transplant, including financial hardship, social responsibilities, geographical isolation, poor health literacy and lack of suitable donors,2,3 and the likelihood of successful living kidney transplant for some individuals may therefore be compromised.4–6 One barrier that is sometimes voiced by patients with ESRD is that it is hard to approach family and friends to donate a kidney.7–9 Evidence from DDL patients within New Zealand suggests this is also the case;2 it remains unknown whether non-DDL listed patients experiences and perceptions of the ‘donor conversation’ are similar to those of DDL patients.

In New Zealand, patients requiring a kidney are encouraged to inform friends and family of their need for a kidney, though it is not suggested they ask directly for one. Anecdotally, ESRD patients often make assumptions about who would, or would not, be a suitable donor within their networks of family and friends.10 Patients may approach some members of their family and not others, based on preconceptions of what makes a successful donor. Alternatively, patients may not approach others at all, preferring to wait for family or friends to offer.11 Currently, there is a lack of information on the motivations and experiences of New Zealand ESRD patients who have experienced approaching others for a kidney. In particular, information on why some ESRD patients do not approach friends or family for a kidney, or why they might ask some family members and not others. An understanding of whom patients choose to approach, or not approach, would enable New Zealand health services to tailor support to patients who are eligible for transplant; this is important when the Ministry of Health is actively seeking to increase donor rates,12 particularly among Māori and Pasifika patients who suffer health inequity in ESRD outcomes.13 Within New Zealand, there is marginalisation of Māori within the New Zealand healthcare system, which results in inequity of care, delayed specialist care and lower life expectancy that cannot be explained by conventional individual and community risk factors,14–17 and further identification of factors contributing to this position are required. This study therefore aimed to examine the factors influencing decision-making among a group of New Zealand ESRD patients considering approaching family and friends for a kidney, in order to gather information that could facilitate development of supports for recipients to identify and successfully recruit potential donors.

Methods

Ethical approvals for the study were given by Health and Disability Ethics Committee (HDEC), HBDHB Research Committee and HBDHB Māori Health Service, and the Victoria University of Wellington Human Ethics Committee. This project utilised a qualitative descriptive approach to analyse interview data from patients with ESRD, examining the lived experience of patients with ESRD who are encouraged to find living kidney donors from their social networks and the factors that influence their decision-making. Participants were recruited from patients with ESRD through the Hawke's Bay District Health Board (HBDHB) and were identified as being on the deceased donor list (DDL), or had family or friends being worked up for living kidney donation (LKD), or both. Participants were interviewed one-on-one, with interviews examining decision-making surrounding donor recruitment, and explored questions such as: With whom did they discuss their need for a kidney, and why? Who did they not approach, and why? How did they approach the request, and what were their reasons for approaching in this way? Had they received offers to donate and how did this feel? Could they identify additional strategies which might have been useful to them, but were either not considered or unavailable? What advice would they give to others in a similar position?

Interviews were transcribed and thematically analysed using NVivo Pro software (Version 11, QRS International, Melbourne, Australia). Various methods can be used for conducting a thematic analysis;18 in this instance a cross-case analysis was adopted to allow insight into the motivations surrounding asking or not asking for a kidney, while not ignoring the nuances of highly individualised responses.19 This method also provides an analytical strategy that focuses on identifying underlying themes across idiographic explanations, which fitted well with the project’s aims of identifying the range and type of motivations articulated by participants.20 Core themes of each interview were first identified during a preliminary line-by-line examination of the transcribed text, and individual motivations were identified. Themes of motivations surrounding asking or not asking for a kidney were coded, along with a detailed explanation of these motivations. Individual motivations were aggregated on the basis of what was primarily emphasised or foregrounded in the interviews.

Results

A total of 15 participants (five female) were interviewed, with ages ranging from 23 to 68 years (mean 49.8); mean interview length was 23 minutes (range 11–45 minutes). This gender proportion was consistent with the eligible population listed on the DDL for the HBDHB. Six participants identified as Māori, three identified as Māori/New Zealand European, five identified as New Zealand European, and one identified as Other European. In 2016, the HBDHB dialysis unit population identified their ethnicity as 63% Māori, 28% New Zealand European, 7% Pasifika and 2% other.

Five participants were pre-dialysis patients who were currently listed on the DDL or had living donors being worked up. Ten patients were already on dialysis, seven of these on haemodialysis and three on peritoneal dialysis. Eight patients were listed on the DDL alone with no living donors being worked up, while three patients were DDL listed and had living donors being worked up. Four patients were not DDL listed, but had living donors being worked up. From the interviews, five major themes arose, with subthemes also identified. These major themes were: will ask; won’t ask; offers; barriers to asking; advice to others (Table 1).

Table 1: Thematic analysis of interview data.

Theme

Sub-theme

Topics

Will ask

Direct recruitment

  • Asking friends and family for a kidney
  • “It’s hard to ask”
  • Anticipating rejection
  • Self-efficacy

Indirect recruitment

  • Sharing their story
  • Using social media
  • Family or friends recruiting on behalf

Won’t ask

Won’t ask and won’t accept an offer

Won’t accept offers

 

  • Cultural or traditional values
  • Philosophical beliefs: Acceptance of how things are; Not wanting loved ones to donate; The anonymity of a deceased kidney

Won’t ask but will accept an offer

Offers

Waiting for offers from family or friends

Receiving offers

What it feels like to have people offer

Barriers to asking

Managing risks

  • Donor health risks
  • Financial impact on donor
  • Relationships

“I don’t look sick”

Predetermining suitability

Limited recruitment opportunities

  • Poor family health
  • Small social circle

Waiting for a deceased kidney

  • Availability
  • Legislation

Misinformation

Advice to others

Effective recruitment

Health literacy

Resources

Psychosocial support

Media focus

Raising awareness

Shock tactics

Future technologies 

Will ask

‘Will ask’ encompassed subthemes of direct recruitment and indirect recruitment, reflecting the approach that the participants used to ask for a kidney. Most participants struggled with communicating need; many participants refrained from approaching friends and family at all, and even those who were practised at discussing their need for a kidney still admitted it was difficult for them to approach others, stating that “it’s hard to ask”. Most participants who approached friends and family favoured a direct approach. However, those who found it too difficult to approach people directly preferred to share their story about their illness rather than ask for a kidney in the hope that sharing their story might engender offers to donate; a small number of participants or their families used social media to do this indirectly.

Won’t ask

‘Won’t ask’ contained subthemes such as ‘won’t ask and won’t accept an offer’ and ‘won’t ask, but will accept an offer’. Many Māori had limited recruitment opportunities due to comorbidities within the extended whanau group. It was difficult for many Māori participants to identify any suitable candidates to approach. Several participants stated that they would never ask a loved one for a kidney; however, some agreed that they would accept an offer of a kidney donation. Other participants, mostly Māori, had turned down all offers to donate, preferring to wait until a deceased kidney became available. Several participants expressed a burden of responsibility when they talked about caring for a transplanted kidney from a living donor, but that the burden did not exist with a deceased kidney because the person donating was already dead. Reciprocity is an important concern for many Māori, but it was also identified as an issue for several non-Māori participants. The donation of a living kidney from a family member or friend was, for some recipients, too big to be considered a gift, and was difficult to accept. Two participants talked about the fact that a living kidney could not be given back; it was not like a favour that can be returned at some point.

Offers

‘Offers’ explored participants’ experience of receiving offers, or that of waiting for an offer. Almost half the participants stated they had not approached friends or family for a kidney, with some of those who had never approached friends or family receiving offers that they had declined. Often the offers were deemed inappropriate, from persons who might not have good health, or had weight or lifestyle factors that might rule them out as donors. Several participants appeared physically uncomfortable when stating that they had no family or friends who had offered.

Over half the participants talked about their experience of receiving offers, stating family or friends had come forward and freely offered a kidney. Several participants said they didn’t get to ask before offers were made. For most, having offers come from family and friends provided a sense of feeling loved. However, while offers were gratefully received, receiving offers could also cause concern; one participant expressed worry that it appeared she was valuing some family member’s lives over others if she accepted a donation from a daughter but not a granddaughter, while another expressed sadness when considering the donor was offering a part of themselves in order to “fix” her. Most participants expressed concern about the perceived risks to loved ones.

Barriers to asking

Barriers to asking grouped subthemes such as limited recruitment opportunities, managing risks and waiting for a deceased donation. Few understood that donor workup was designed to screen the donor to ensure they would be considered safe to donate and live with one kidney, indicating poor health literacy creates a barrier to initiating a donor conversation for some participants: only two of the 15 participants knew that donating a kidney was not likely to cause long-term harm to the donor. Other barriers included limited recruitment opportunities, how to communicate the need for a kidney when the participant looked well, factors relating to legislation (eg, limited availability of organs from deceased persons), and management of risks associated with having poor health.

Advice to others

‘Advice to others’ contained recipients’ responses to what advice they might give to someone in their position, or what they might have done differently. Many participants felt understanding the transplant process, and what makes for a suitable donor, was important information to have before approaching potential donors, so they could be prepared to answer questions friends and family might have. Several participants expressed reticence with following up potential donors, as follow up contact could be perceived as putting pressure on potential donors. Several also expressed regret that they had not been aware of how to slow progression of their chronic kidney disease (CKD) to delay dialysis.

Discussion

This is the first New Zealand study examining the decision-making of patients with ESRD and the reasons they choose to approach, or not approach, potential living kidney donors. In New Zealand, patients with ESRD who are transplant-eligible are encouraged to discuss their treatment options with family and friends to see if any offers to donate a kidney are forthcoming. Many patients perceive this approach, albeit indirect, as “asking” for a kidney. Data highlighted the difficulty many participants face when considering who, how and when to initiate conversations with potential donors, and also illuminated the impact of family comorbidities on the donor conversation for some Māori individuals. Further, many Māori participants preferred to wait for a deceased kidney to become available in preference to approaching whanau, or believed that the DDL was their only option for transplant. Findings illuminate the complexity of this interaction for all participants, with information highlighting potential avenues for support for ESRD patients who are looking to recruit a living donor. Cultural, ethnic, psychosocial and economic factors also influence patient willingness to approach potential donors,5,21–24 and all participants experienced one or more of these barriers. Suggestions are made as to how to address some of the identified issues.

Cultural influences on decision making

Māori face significant disparities in both healthcare14–17 and LKD transplant, with low likelihood of receiving pre-emptive kidney transplantation.13 Several Māori participants stressed there was a need to involve whanau in decision-making when it comes to treatment options; this is congruent with New Zealand research on DDL patients and requires consideration in donation operational procedures to allow appropriate consultation with whanau when donation is being considered between family members.13,25 Most Māori participants in this study were from large families and had relatives who were well intentioned, but because comorbidities are often prevalent in Māori health, they struggled to identify suitable donors. More research into streamlining care pathways for Māori ESRD patients is required, and should also involve other at-risk New Zealand groups such as the Pasifika ESRD community to facilitate communication and identify appropriate care pathways.

Donor conversations

All participants described difficulty with approaching friends and family for a kidney, many stating that “it’s hard to ask”, and that donor conversations, or being offered a kidney donation, was a highly emotional experience. For many, initiating a donor conversation was a barrier in itself: almost half had never asked anyone to donate due to concerns for donor health and wellbeing, limited recruitment opportunities or because of poor communication skills, self-efficacy or health literacy. Several participants had poor health literacy,7,26 which has an impact on decision-making and informed choice, identification of available treatment options or of suitable potential donors, and problem-solving. In communities where living kidney transplant uptake is low,4,22,23 a correlation between improving health literacy and improved transplant uptake has been demonstrated,22,23 and our data reinforces the necessity to address health literacy with potential recipients in New Zealand. Additionally, there is growing support for recruitment of a patient advocate within the patient’s network of family and friends, who would act on behalf of the transplant candidate to initiate important donor conversations.10

Many participants stated a preference to wait for offers rather than ask family or friends to consider donating, to avoid pressuring potential donors who may be reluctant to donate; others thought that asking may affect personal relationships. This highlights the difference for patients between facilitating conversations about donation, and about asking directly for one which may be perceived to carry an element of risk for some persons. Many factors contribute to a reluctance to initiate a donor conversation or accept an offer of a kidney, including lack of confidence, poor self-efficacy, inability or non-willingness to communicate need, fear that their request for a kidney may be declined, or worry that the donor might need to give their kidney to a more ‘deserving’ family member in the future.4,9,27 Additionally, patients fear post-transplant rejection of a donated kidney, or are concerned about donor health risks.2,9,28–31 They may also feel an obligation for a ‘gift’ that could not be reciprocated, or guilt should the kidney be rejected.9,32,33 Findings suggest these factors and concerns need to be addressed in New Zealand ESRD patients prior to initiating donor conversations, perhaps through providing communication skills training in conjunction with health literacy and support to develop an appreciation of the various ways in which donor conversations can safely occur.

Suggested support strategies for ESRD patients looking to acquire a kidney

Support was a key theme identified by many participants, with almost all desiring more support to facilitate approaching potential donors. The type of support requested was multifactorial, and several support strategies have been proposed to address concerns arising from the data (Table 2). Findings suggest psychological support, counselling, cultural or spiritual support should be made available to all recipients, ideally before the patient has approached any potential donor, in order to address concerns such as self-efficacy, reciprocity and relationship management. This support could also address negative quality of life, depression or distress that may arise as the result of being diagnosed with a chronic, life-limiting disease.

Table 2: Aims, potential support strategies and possible outcomes for patients who will be asking family and friends for a kidney.

Aim

Potential support strategy

Outcome

Support for emotional wellbeing

Availability of psychology support to all recipients (as required) prior to approaching donors

Patients feel better supported to approach donors, removing some of the “hard to ask” barriers

 

Renal services are adequately resourced with qualified psychologists to meet the need of potential transplant candidates

Identification of barriers

Develop a screening tool to assess willingness and motivation to pursue LKD as well as identify health literacy, communication, social or self-efficacy barriers; support is tailored to meet unmet needs

Potential for ongoing psychosocial support, counselling, cultural and spiritual support

 

Development of an action plan to support patient’s health literacy, communication skills, confidence or approach to donors and help navigate transplant process

Cultural competency

Involve whanau in CKD treatment decision-making where possible or where indicated by patient or screening tool results

Transplant candidates and their whanau are provided with education and support about the treatment options and the transplant process in order to make informed decisions

Consistent transplant messages

Revisit transplant conversation regularly; ensure transplant pathway is noted on all GP letters; have consistent messages re: transplant

Transplant candidates and their health providers have consistent information about the transplant pathway and expected outcomes

Peer support

Peer support available to recipients to help with decision-making and provide non-clinical emotional and practical support and information

Transplant candidates have the opportunity to discuss any concerns or questions with someone who has a lived experience of transplant

Indirect donor recruitment support

Development of sample social media templates in a variety of languages, with ability to be customised

Patients and their networks are supported to initiate indirect recruitment with tools that offer accurate information and direct the reader to transplant coordinators 

Educational support is required to ensure adequate health literacy and facilitate early clinical engagement. Participants who had a good understanding of their renal disease and treatment options were more likely to be proactive in their health management and in trying to recruit donors. Participants also felt that having accurate information about the transplant process before they approached potential donors was paramount; it is therefore important clinicians regularly revisit the transplant conversation, as attitudes towards transplant, viewpoints and circumstances change over time.2 Such conversations and information must be congruent between transplanting centres, renal service staff, general practitioners and community health workers, in order to deliver similar messages to the patient and increase the likelihood of transplant;2,31 Walker et al (2017) found that delayed diagnosis created marginalisation among many Māori patients with CKD, which created a missed opportunity to engage preventive care,13 reinforcing the likely benefit of effective patient-clinician communication and the necessity to tailor support specifically for Māori and other disproportionately disadvantaged groups in order to address existing health inequities.

To provide tailored support for New Zealand ESRD patients, development of a screening tool is suggested to assess transplant willingness and motivation, health literacy, communication skills and emotional wellbeing. Further New Zealand-centred research is also required to determine how such a tool may best serve New Zealand’s unique cultural and ethnic profile, including Māori or Pasifika ESRD patients who are currently disadvantaged in health provision within New Zealand.15–17 Further, peer engagement between recipients has not previously been explored for New Zealand ESRD patients, and this could be considered to support recipient’s concerns, allay specific anxieties, build confidence or reassure the recipient as they make treatment decisions. This is especially necessary to determine how to best serve New Zealand’s various cultures, including Māori communities, where this and previous studies have identified whanau interaction is important in the decision-making process.33,34 Finally, some participants were turning to social media sites such as Facebook to recruit donors, and development of social media templates for ESRD patients to utilise could facilitate awareness of the need for organs or encourage families to discuss organ donation, which can assist in raising donor rates.35

Limitations

There were some limitations to this small study. A modest number of participants were interviewed (n=15), however there was good thematic saturation in the data gathered, which supports the validity of the findings. Participants were all ESRD patients registered with the HBDHB Renal Service and eligible for transplant, and therefore were a homogenous group that reflected the renal population awaiting transplant in one geographical region of New Zealand. This could introduce potential selection bias, however the data is potentially generalisable to other New Zealand regions, such as Northland, who have a demographically similar renal population to Hawke's Bay.

Conclusion

This is the first New Zealand study to examine ESRD patients’ experience of the donor conversation. It highlights the many difficulties facing ESRD patients who are looking to acquire a donor kidney, including that “it’s hard to ask”, and raises the question of whether donors feel an expectation to ask for a kidney, as opposed to facilitating donor conversations about need. Despite the small sample size, some differences were noted between Māori and non-Māori ESRD patients who are looking to recruit donors. Findings show that for some Māori, LKD may not be a feasible transplant option, even if the patient is a suitable transplant candidate. Many factors identified were similar to those seen in international research of ESRD patient populations, such as low uptake of LKD in some indigenous communities where poor health literacy or limited recruitment opportunities are present. It is suggested that a New Zealand-specific screening tool be developed to assess willingness and motivation to proceed with transplant, along with an assessment of cultural needs, health literacy, ability to communicate need and emotional wellbeing. Champions from within the patient’s network of family and friends can play an important role in initiating donor conversations for those transplant candidates who struggle to advocate for themselves, and further support could be provided to develop initiatives in this area. Psychological support should also be made available to all potential recipients to negate effects of stress and its impact on personal relationships that both the situation and conversations around donation frequently impart.