Motivations and Experiences of Living Kidney Donors

In this post, Dr. Allison Tong (AT) discusses her recent paper in the American Journal of Kidney Diseases on using thematic synthesis to understand the motivations and experiences of living kidney donors with Dr. Vinay Nair (eAJKD), eAJKD advisory board member.

eAJKD: Can you please summarize your study?

AT: We conducted a systematic review and thematic synthesis of qualitative studies on the experiences and perspectives of living kidney donors. We found that kidney donation has a very profound impact on the lives of donors. After donation, they are required to renegotiate their identity, roles, and relationships.

eAJKD: What advantage does the type of analysis used in your study have over standard studies such as surveys?

AT: Qualitative research uses techniques such as in-depth interviews or focus groups to elicit in-depth data about an individual’s experiences, motivations, beliefs, and attitudes; which quantitative surveys alone may not capture.

Thematic synthesis identifies recurring themes or issues in the primary qualitative studies, and analyzes these themes to draw conclusions. The synthesis of findings from multiple qualitative studies can provide a range and depth of meanings, experiences, and perspectives of participants across different contexts. It can be used to generate new theoretical or conceptual models, and to identify research gaps.

eAJKD: Are there any other fields in medicine where this approach has lead to discovery or change?

AT: Qualitative health research is emerging as an important source of evidence for informing health care and policy. Thematic synthesis was initially developed to address specific questions about the need, appropriateness, acceptability, and effectiveness of interventions. In 2008, Thomas and Harden conducted a thematic synthesis to identify new barriers and facilitators of healthy eating among children to inform policy about promoting healthy eating.

Recent thematic syntheses have been conducted on the views of patients and care givers in treatment decision making for chronic kidney disease and parental caregivers of children with chronic kidney disease. These have underpinned recommendations on information and support needs of patients and carers to improve decision making published in the UK National Institute for Clinical Excellence Guidelines on peritoneal dialysis.

eAJKD: How do you rank the comprehensiveness of reporting in this type of study?

AT: Two reviewers independently assessed the comprehensiveness of reporting using a framework adapted from the Consolidated Criteria for Reporting Qualitative research (COREQ). For each primary study included in our review, we assessed aspects of the research team, participant selection, data collection, data analysis, and reporting. The results of this appraisal can provide contextual details for readers to evaluate the transferability and trustworthiness of the study findings to their own setting.

eAJKD: Can you briefly describe the six themes that were identified relating to the participants’ decision to donate? Did you examine the prevalence of specific themes or if specific themes were seen in specific types of donor (eg, natural response as a reason for donation in parents who want to donate to children)?

AT: The six themes relating to the decision to donate were the following: compelled altruism, desire to improve the quality of life of their loved one; inherent responsibility, to fulfill a natural duty; accepting risks, weighing benefits against potential complications; family expectations, meeting a family obligation; personal benefit, to gain social benefits; and spiritual confirmation, fulfilling a higher calling.

The prevalence of the specific themes was examined by identifying the number of studies reporting each specific theme. Many primary studies do not report the types of donors included, or the type of donor was not explicitly linked to a theme or quotation. However, where possible, we reported themes that were more commonly identified among specific types of donors. As in the example you have identified, an “inherent responsibility” to donate was more evident in parental donors; meeting “family expectations” appeared more prominent among sibling donors; and gaining “personal benefit” in terms of quality of life and strengthened relationship was more apparent among spousal donors.

eAJKD: Kidney donation had an impact, both positive and negative, on the donor’s identity, roles within his/her family, and relationship with the recipient after donation. Did you examine the prevalence of different responses in specific cohorts of donor?

AT: We could only review the number of studies reporting each theme. A link between themes or quotations and a specific type of donor is not made explicit in many of the primary studies.

eAJKD: What do you see as the next step in identifying which donors are more likely to have a positive versus negative outcome after donation?

AT: I believe our findings can be used to inform survey studies conducted with different types of donors to assess donor characteristics that may be associated with positive and negative outcomes after donation.

eAJKD: How can your study be used to direct future research in psychosocial outcomes of living donors?

AT: To date, there are no donor-specific quality of life instruments to assess psychosocial outcomes. The issues we have identified that may reduce quality of life include contending with multiple roles, feelings of neglect, vulnerability to health problems, and anxiety over the recipient. These can be integrated into the development of specific tools used to measure psychosocial outcomes among living kidney donors.

eAJKD: Based on your study what can we do to improve the psychosocial outcomes and decision-making process of living donors?

AT: We support the use of “donor advocates,” multidisciplinary assessment, and pre-donation counseling for living kidney donors. This can ensure that kidney donors have the capacity to make decisions without undue coercion or pressure, and the awareness of the range of potential benefits, risks, and harms of donation as experienced by individuals who have donated a kidney. After donation, we suggest that kidney donors be given access, as needed, to mental health services to minimize the risk of serious psychological harms. Active outreach services in the event of recipient complications or death is also recommended.

To view the article abstract or full-text (subscription required), please visit AJKD.org.

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