'It's hard to ask': Examining the factors influencing decision-making amongst end-stage renal disease patients considering asking friends and family for a kidney

Abstract

<p>Background: Organ donation is an important facet of healthcare delivery in New Zealand, with donation often leading to an increased quality of life for recipients, and a reduction in healthcare costs for the community. People who require new organs have limited options in regards to organ access: they can receive organs from deceased donors, or if a kidney is not volunteered, they might ask someone to donate. For those that choose to ask someone to donate an organ, one barrier that is sometimes voiced is that it is hard to ask family and friends to donate. This project sought to explore the issues surrounding asking for an organ by end-stage renal disease (ESRD) patients, in order to gain a better understanding of the decision-making process and motivations of patients as they choose or decline to approach others for a kidney. Methods: Participants were recruited from patients with ESRD through the Hawke’s Bay District Health Board. Potential participants were identified as being on the deceased donor list (DDL), or had family or friends being worked up for living kidney donation (LKD). Participants were interviewed and asked about the challenges of asking for a kidney, including such questions as: Who did they ask, and why? Who did they exclude, and why? How did they approach the request, and what were their reasons for asking in this way? Could they identify additional strategies which might have been useful to them, but were either not considered or unavailable? A qualitative descriptive approach was utilised to analyse interview data. Results: Fifteen participants were interviewed, with most stating that it was hard to ask for a kidney and almost half having never approached anyone for a kidney. For many patients, being expected to recruit donors for LKD was a barrier in itself. Commonly identified themes indicate that recipients may be concerned for the health and wellbeing of their loved ones, or have limited recruitment opportunities, or poor health literacy or self-efficacy. Many Maori recipients stated they favoured a whanau approach to discussing transplant, and most recipients desired more support in order to facilitate approaching donors. Conclusions: Findings suggest it would be useful to develop a screening tool assessing willingness and motivation to accept a living kidney donation along with self-efficacy, communication and health literacy levels prior to recipients initiating conversations with potential donors, in order to provide tailored support to the recipient with their initial approach. Additionally, psycho-social support could be offered to all recipients to help identify unmet needs or further barriers such as reciprocity or relationship concerns. Finally, closer communication between health professionals who provide care for the recipient, as well as positive media stories and campaigns that raise awareness of the need to transplant may create opportunities for LKD to be discussed within the recipient’s social network.</p>

Kidney transplantation access and outcomes for Aboriginal and Torres Strait Islander children and young adults, 1963–2020: an ANZDATA registry study

“…Reasons for higher HLA mismatches among Aboriginal and Torres Strait Islander children and young adults can include lower donation rates, of both living and deceased organs from Aboriginal and Torres Strait Islander communities 25,26 . Some identified barriers to organ donation include inadequate transmission of key information to families by health professionals, hesitancy by recipients to request donation given the burden of medical conditions shared by family members, worry about its effects on donors, 27‐30 and cultural bias, as documented for adult nephrology care systems 31 . Much work is required to improve open communication between health care providers and people with end‐stage kidney disease, including involvement of family members in these conversations, more efficient recipient and donor preparation, and engaging with community preferences for involvement of community elders in improving shared understanding of kidney health and the roles of living and deceased organ donation and organ transplantation 26 …”

Prejudice and Fear as Influences in Relation to a Successful Organ Donation – Experiences of Immigrants Living in Sweden

“…For patients who were far from hospitals, fears were most often about insufficient and irregular care, which could lead to additional health complications of the subjects (28). This included a distinct concern about kidney transplantation failure, leading to a return to dialysis and significant time spent away from home trying to find another donor (28)(29)(30).…”