Abstract

Key words : Ethiopia, Kidney transplantation, Kidney transplant recipient, Living kidney donation, Renal transplant

Introduction

Kidney transplant is widely recognized as a desirable treatment option for end-stage renal disease and is often preferred to dialysis. Few studies have examined the experience of Ethiopian individuals with end-stage renal disease. Access to renal replacement therapy throughout Sub-Saharan Africa, including Ethiopia, is restricted because of the limited number of dialysis centers, lack of qualified nephrologists, high cost for patients, lack of brain-death legislation, and donor shortages.^1,2 In 2015, The Ethiopian Federal Ministry of Health, St. Paul’s Hospital Millennium Medical College (SPHMMC), and the University of Michigan initiated a coordinated effort to establish the first living-related kidney transplant program in Ethiopia. The original articles on the Ethiopian kidney transplant experience published by Ahmed and colleagues and Abebe and colleagues summarized the establishment of the center as the first in Ethiopia, the legal framework regarding living kidney donation, the development of many supportive medical departments to sustain transplant care, and the surgical approach in this emerging transplant program.^3-6

In Ethiopia, the expense of dialysis is unaf-fordable to most patients with end-stage renal disease; it also often requires travel or relocation, as maintenance dialysis centers are scarce.³ Individuals pursuing transplant, before the establishment of the in-country program at SPHMMC, travelled abroad. Both of these treatment options are taxing on individuals and carry the potential of exposure to physical health hazards. The financial burdens to individuals are significant, as are the practical and emotional challenges of being away from family, household, and employment. Although it is well reported in the literature that organ transplantation is associated with longer and better quality of life, there is also existing research that describes psychological effects following transplantation and living kidney donation.^7,8

Consistent with guidelines from the World Health Organization⁹ and US laws and guidelines, a thorough psychosocial evaluation is conducted by a psychologist, psychiatrist, or transplant social worker before transplantation or living donation. To address the risk of organ trafficking,¹⁰ Ethiopian legislation was passed to limit the donor-recipient relationships to blood relatives or marriage.¹¹ After the transplant team approves a donor, a National Transplant Committee must approve all donor-recipient pairs prior to moving forward to surgery.

Several outcome studies throughout the world have demonstrated that kidney transplant recipients report an improved quality of life, particularly in comparison to the pretransplant time period, as well as improvements to psychosocial well-being and cognitive functioning.^12,13 A study conducted by McGregor¹⁴ reported that kidney transplant recipients had significant improvement with regard to perceived improvements in relationships with others, including the donor, family, and friends. When compared with patients on dialysis, transplant recipients reported less distress, based on both physical gains and improvements in energy as well as decreasing feelings associated with concerns about the future and dependence on others.¹⁵ In examining psychological well-being specifically, Gremigni and Cappelli¹⁶ demonstrated that kidney transplant patients were comparable to healthy individuals; however, they noted long-term effects for kidney transplant recipients in the social domain.

Across countries and centers, the transplant recovery period is stressful. It requires recipients to adjust to a complex medical regimen, which includes strict medication management, adherence to frequent blood draws and appointments, and recuperation from surgery. Studies have also shown depression to be prevalent in kidney transplant recipients at varying rates; in a large sample, depression was associated with mortality as well as graft loss and return to dialysis.^17,18 Feelings of indebtedness and increased stressors related to the transplant experience have also been reported.¹⁹

In regard to donor psychological outcomes, qualitative studies have reported that most donors experience their donation act in a positive manner, described increased self-esteem and improved emotions, and reported that they would reiterate their gesture if possible.^20-22 In a systematic review conducted by Clemens and associates,⁸ which reviewed 51 studies that examined 5139 donors over 4 years, most donors (more than 77%) did not experience depression and anxiety after donating, nor did they report changes or improvements in their relationships with their recipient or other family members.^23-28 Some donors have reported feeling as though they were treated like special people.^24,26 Donors have reported increases in personal growth, interpersonal experiences, and spiritually, in that donation is a means of honoring a higher power.^29,30 According to research conducted by Jackobs and colleagues,²² most donors felt that donation met their psychological expectations.

Research, however, has also described less positive experiences for living donors, including negative psychosocial implications.⁸ This includes reports of donors feeling ignored, abandoned, and unappreciated; disappointment related to the surgery; sadness and loss faced with adverse recipient outcomes; and feelings that the procedure was a waste.^24,31 Interestingly, in a study that explored the psychosocial impact of donation over time, although donors described the experience as positive and noted benefits, this did not translate into overall improvements in psychosocial questionnaire scores.³²

In the present study, we sought to examine the psychological well-being of Ethiopian living kidney donors and recipients after transplant using a framework developed by Ryff³³ based on concepts from developmental psychology, clinical psychology, and mental health. Explorations of the differences in psychological well-being between these 2 groups, as well as the impact of demographic features, were also conducted. The general purpose of the study was to understand these psychological experiences in order to facilitate informed consent and guide the development of psychosocial services in a developing transplant program in Ethiopia.

Materials and Methods

Study design
From September 2015 to December 2018, 82 kidney recipient and living donor pairs completed living donor kidney transplant and nephrectomy at SPHMMC in Addis Ababa, Ethiopia. Institutional Review Board approval was granted through the SPHMMC ethics board to conduct a retrospective cross-sectional study of psychological well-being of recipients and living donors after living kidney transplant and living donor nephrectomy. Privacy of participants and the confidentiality of the obtained data were maintained. Convenient sampling techniques were used to identify potential study participants. Inclusion criteria were kidney transplant recipients with functioning kidney grafts, kidney recipients who were living at the time of recruitment, and living kidney donors who lived in reasonable proximity to SPHMMC and who could be located. Exclusion criteria were kidney transplant recipients and their living donors who received their transplant out of the country but who received their care at SPHMMC.

Seventy-five kidney transplant recipients and 64 living kidney donors consented to participate in the study. The number of consented study recipients was less than the potential pool as 5 recipients died after transplant due to other medical conditions and 2 transplant recipients had nonfunctioning grafts at the time of the survey. Of the 11 living donors who did not participate in the study, 3 declined to participate and 8 were not able to be reached by the research team. Seven living donors were excluded from the study as their recipients were either deceased or had nonfunctioning grafts.

Data collection
Study participants completed 2 self-administered, structured questionnaires: the Ryff Psychological Well-Being Scale (PWB Scale)³³ and a demographic questionnaire.

The PWB Scale is an 84-item self-reported measure based on a multidimensional model of psychological well-being and includes 6 key dimensions: (1) Self-Acceptance (positive evaluations of oneself and one’s past life), (2) Personal Growth (a sense of continued growth and development as a person), (3) Purpose in Life (the belief that one’s life is purposeful and meaningful), (4) Positive Relations With Others (the possession of quality relations with others), (5) Environmental Mastery (the capacity to manage effectively one’s life and surrounding world), and (6) Autonomy (a sense of self-determination). Items from the separate scales are mixed; 1 item from each scale is successively added into 1 continuous self-report instrument. Participants respond using a 6-point Likert scale. Responses to negatively scored items are reversed in the final scoring procedures so that high scores indicate high self-ratings on the assessed dimension. There are no specific scores or cutoff points for defining high or low well-being. Those distinctions are best derived from distributional information from the data collected. Internal consistency (alpha) coefficients for each of the 6 dimensions are as follows: 0.83 for Autonomy, 0.86 for Environmental Mastery, 0.85 for Personal Growth, 0.88 for Positive Relations With Others, 0.88 for Purpose in Life, and 0.91 for Self-Acceptance.^34,35 Previous studies using PWB Scales have been conducted in African countries³⁶ and other world countries^35,37,38; therefore, this is a suitable scale for our present study.

The English version of the PWB Scale was translated into Amharic by a higher degree English language professional. It was then translated back into English, and the translation was verified by a second higher degree English language professional. After translation, a professional in psychology and psychiatry reviewed the translated questionnaire to maintain face validity. For those study participants who were not able to read, research data collectors provided assistance to complete the questionnaires. Demographic information was gathered in Amharic using a questionnaire to compile data regarding age, sex, region, employment status, marital status, highest level of education completed, religious affiliation, income, and relationship to the recipient or living donor.

Statistical analyses
Data collection and analysis were conducted using the SPSS 20.0 data processing program. The results of the study were analyzed through descriptive statistics, including frequencies, means, and percentages. These were used to describe the general psychological well-being of the donors and the recipients. We used t tests and analysis of variance (ANOVA) to analyze the differences and the relations between the demographic variables and psychological well-being.

Results

Demographic characteristics of recipients
The demographic characteristics of the study recipients are shown in Table 1. Of recipients, 73% were male, approximately two-thirds belonged to the 20- to 40-year age group, and 30% belonged to the 41- to 65-year age group. Approximately half of the study recipients were married and 38% were single. Education levels varied, with approximately 75% of recipients having completed a high school education or more. The most common religions practiced were Orthodox Christianity (77%) and Islam (13%). Approximately 35% of the study recipients were brothers to the donor. More than half of (65.3%) of recipients were from Addis Ababa, the urban capital where SPHMMC is located.

Demographic characteristics of the living donors
The demographic characteristics of the study donors are shown in Table 2. All donors were over the age of 20 years, with 78% between 20 and 40 years old. Approximately 90% were either married or single. Roughly 25% of donors had either a primary school education or could not read or write, and approximately 50% had a high school education, certificate, or diploma. Approximately 30% of the donors who participated in the study were brothers to the recipient.

Psychological well-being of kidney recipients and living donors
Ryff’s PWB Scale scores for recipient study participants are shown in Table 3. Raw scores of participants were compiled as a whole, regardless of recipient or donor status, to determine the quartiles for each of the subscale scores and for the composite score. Approximately 83% of recipient participants scored in the upper 3 quartiles for the composite PWB Scale score. For the Self-Acceptance subscore, roughly 57% of recipient participants scored in the lower half. Over one-third scored in the upper quartile on both the Purpose in Life and Positive Relations With Others subscores. In the Personal Growth and Environmental Mastery subscores, recipient scores were evenly distributed in the lower and upper halves. Approximately 57% of recipient participants scored in the lower half of the Autonomy subscore.

Ryff’s PWB Scale scores for living donor study participants are shown in Table 4. Fifty percent of donor participants scored in the middle 2 quartiles for the composite PWB Scale score with roughly 20% in the highest quartile. Approximately 50% of donor participants scored in the upper quartile in the Self-Acceptance subscore and nearly 30% were in the highest quartile. Slightly over one-quarter scored in the highest quartile on the Purpose in Life subscore. In the Positive Relations With Others subscore, less than 20% of donor participants scored in the highest quartile with 54% in the lower half of scores. Approximately 16% of donors scored in the highest quartile on the Personal Growth subscore. Roughly 58% scored in the lower half on the Environmental Mastery subscore. For the Autonomy subscore, nearly 57% of donor participants scored in the lower half.

Table 5 shows the differences of the PWB Scale scores of recipient study participants and living donor study participant using t tests. Results for recipients (mean [SD] of 392.53 [44.23]) and living donors (mean [SD] of 386.56 [40.45]) did not differ significantly on the PWB Scale (t test [degrees of freedom] = 0.82 [1]; P = .41). We found no significant mean differences between donors and recipients on most of the PWB subscales after transplant except for the Personal Growth subscale, where mean results for recipients (mean [SD] of 69.01[8.39]) and living donors (mean [SD] of 65.89 [8.84]) were significantly different. To identify whether any demographic factors in recipients and living donors affected the PWB Scale score, t tests and one-way ANOVA tests were conducted.

Factors affecting psychological well-being
With regard to the effect of sex of kidney donors and recipients, we found no significant differences in PWB Scale results. Results in male recipients (mean [SD] of 392.52 [44.39]) versus female recipients (mean [SD] of 392.55 [44.91]) were not significantly different (t test [degrees of freedom = 0.69 [73]; P = .49). The PWB Scale result for male donors (mean [SD] of 392.87 [41.93]) was greater than that of female donors (mean of 381 [38.87]); however, the difference was not significant (t test [degrees of freedom] = 1.17 [73]; P = .24). The similarities between male and female donors and recipients may exist because of the psychosocial assessments conducted before transplant and because both male and female participants lived in the same environment and had the same living standard.

Age had no significant effect on PWB Scale results for kidney recipients and donors after transplant (F[2,72] = 0.18, P = .83 and F[1,62] = 2.5, P = .12). A similarity may have existed because most participants (~75%) were over 18 years old. This finding was consistent with the finding from Springer and colleagues³⁹ who found little variation in psychological well-being scores on all 6 subscales according to age.

Marital status had no significant effect on PWB Scale results for recipients and donors after transplant (F[4,70] =1.17, P = .33 and F[3, 63] = 0.39, P = .39). This finding is inconsistent with Clarke and colleagues40 who found married individuals fared better on PWB Scale score compared with the unmarried group.

Education level had no significant effect on PWB Scale results for recipients and donors after transplant (F[2,72] = 0.15, P = .86 and F[2,61] =1.62, P = .21). This finding is inconsistent with other studies, which found that individuals with more education had higher overall PWB Scale results.^41,42

Discussion

Psychological well-being of recipients
We found that approximately 83% of study recipients scored in the upper 3 quartiles for the composite PWB Scale score. Recipient data for overall PWB Scale were consistent with other studies, which have demonstrated overall positive psychosocial well-being following transplant.^12,13

With regard to study recipient PWB Scale subscores, most recipients were in the lower half of scores for Self-Acceptance, whereas 32% scored in the highest quartile for the Purpose in Life subscale. These distinct subscore findings may reflect individual self-image and self-esteem stressors that transplant recipients face posttransplant but an improvement in perception of purpose and contribution as recipients are able to return to pre-illness household and vocational roles. In the context of Ethiopian society in which most Ethiopian ethnic groups are collective, that is, prioritizing the needs of groups over the needs of individuals, it can be hypothesized that the ability to contribute to the household or society could be reflected in Purpose in Life subscores.

For the Positive Relationship to Others domain, about 30% of recipients scored in the highest quartile. This encouraging finding regarding social relationships is consistent with other findings,¹⁴ including studies that compared kidney transplant recipients with patients on dialysis¹⁵ and a healthy population.¹⁶ For the Autonomy subscale, 73% of recipients scored in the lower 3 quartiles, perhaps reflecting posttransplant dependence on family because of medical needs. Notably, our study did not compare PWB Scale results with findings before transplant; therefore, we cannot comment on changes to well-being related to transplant intervention.

Psychological well-being of living donors
Living donors in our study scored in the lower 3 quartiles for the composite PWB Scale, with nearly 30% in the lowest quartile. The living donor subscores may help us understand this finding. For the Positive Relationship to Others subscore, most living donors fell in the lower half, perhaps reflecting weaker ties to others. This might be explained by cultural customs or norms in Ethiopia in which family members have a responsibility to care for one another, rather than this action being perceived as a “special act.” This cultural expectation in the Ethiopian culture would not invite different or special treatment for the donor. Rather than strengthening the relationship of the donor with others in their life, this score may reflect the previously reported dynamic of living donors feeling forgotten and isolated after donation.^24,31 Conversely, nearly one-third of living donors in this study were in the highest quartile in the Self-Acceptance subscore, which reflects a positive self-image. This finding is consistent with other studies^20-22 and may affirm that living donors are happy and comfortable with their decision to donate.

Given that kidney transplant is a lifesaving treatment in Ethiopia and aligns with the strong cultural value of serving one’s family, it was expected that living donors would score high in the Purpose in Life subscale related to their donor experience. Surprisingly, this study revealed that most living donors scored in the lower half on the Purpose in Life subscale. This may indicate that the act of donation did not have the impact that was expected by the researchers. Lack of a baseline understanding of a donor’s feelings of purpose before donation prevented us to comment on any changes in feelings of purpose. However, results can provide guidance to the psychological and social work teams who help potential donors before donation to moderate expectations.

Differences in psychological well-being between recipients and donors
This study found no significant differences in PWB Scale scores between recipients and donors and no mean differences between the 2 groups on most of the subscales. One exception was the Personal Growth subscale, in which a significant mean difference was shown, with recipients scoring more positively in this domain. This subscale, which reflects continued personal growth and development, may be explained by the “new lease on life” phenomenon that recipients experience with transplant, particularly for Ethiopian transplant recipients who likely considered their own mortality while on dialysis, an experience that donors would not have had to confront.

Conclusions

This initial study of the psychological well-being of kidney recipients and living donors provides valuable information and baseline data about the experiences of recipients and donors in a developing transplant program in Ethiopia. Evaluations of the psychosocial readiness and psychological experiences of both recipients and donors are important for patient care and program development, as well as for long-term outcomes. This study found that this cohort of Ethiopian recipients demonstrated overall psychological well-being scores similar to more established centers. For recipients, the lifesaving treatment of living kidney transplant provided them the opportunity to acknowledge and value their purpose in life and their contribution to family and society. When we compared subscores between recipients and living donors, the results showed that recipients experienced greater personal growth than living donors, which may also be related to the possibility of health and future growth in their personal, familial, and professional goals. With regard to donors, our results showed that the experience of our living kidney donor cohort was mixed. Donors had a higher Self-Acceptance subscale result, suggesting that they were happy with their decision to donate, as they were of service to their family member. This cohort also had lower Purpose in Life subscale scores, suggesting that they felt perhaps abandoned and may not be as appreciated as they had expected.

Limitations and future directions
There are several limitations to this study. Our sample was small, and the measures required translation and interpretation services. It is possible that participant responses were impacted by the translation or interpretation of the data collectors. In addition, this study measured psychological well-being at variable time points posttransplant or after donation across the sample. The PWB Scale scores could change over time, which cannot be explored with this study design. Furthermore, PWB Scale data were not collected before surgery; therefore, we cannot comment on changes to psychological well-being from presurgery to posttransplant or donation. Lastly, the PWB Scale is broad and does not measure anxiety or depression specifically, which would be meaningful to explore.

There were several lessons from this study that will help to inform and shape future research and program development. The use of standardized measurement tools may not adequately capture the psychological experiences for transplant recipients and living donors. Given the lack of statistically significant results and yet the breadth of important anecdotal comments that speak to the psychological experiences of transplant and donation, the next step in our research will be to use a mixed-methods approach, with both standardized measurement tools and qualitative interviewing, to fully understand the lived experiences of this population. In addition, it will be important to gather baseline psychological data before transplant or donation, as well as after surgery, to understand the specific impact of transplant and/or donation.

Future research should also consider examining the experience of caregivers to understand how transplant and donation impact the family system. Additional research efforts may also explore differences in male versus female recipient candidates as well as survey the experience of living donors who experienced donor nephrectomy by hand-assisted laparoscopy compared with donor open nephrectomy.

With regard to changes in programmatic efforts, it may be beneficial to seek opportunities to contact donors after donation to inquire about their well-being, understand whether donation met expectations, and, if appropriate, reinforce the benefits of living donation. Additional areas of exploration in this domain are to compare the experience of the Ethiopian living donor cohort with living kidney transplant donors in other countries whose donation is lifesaving.

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