Table 2 Characteristics of studies included in the review (in alphabetical order)

Ahmed et al., 2023

United Kingdom

HCPs: Transplant coordinators

19

8

11 F

8 M

73% White; 26% S. Asian

Semi-structured interview

Thematic analysis

Understand LDKT decisional needs of people from minority ethnic groups from perspective of kidney HCPs

Language Barriers; Cultural Awareness, Trusted Personnel, & Staff Diversity; Timing of Education; Setting of Education; Suitability of Patient Facing Information; Knowledge about LDKT; Risk Perception; Cultural & Religious Beliefs

Nephrologist

7

Transplant surgeon

3

Specialist Nurse

1

Alhalel et al., 2019

USA

Transplant candidates

21

18 F

18 M

86% Hispanic

Semi-structured interview; survey

Thematic analysis

Assess candidates and potential LDs perceptions of the Hispanic Kidney Transplant Program

Presented candidates and potential LDs perceptions and motivations, and impacts of Hispanic Kidney Transplant Program on LDKT

Family members/

potential LDs

15

Bailey et al., 2021

United Kingdom

Patients

13

17 F

15 M

84% White

Semi-structured interview

Thematic analysis

Views of stakeholders on possible intervention components using previously established LDKT interventions/support

Perceived Cultural Norms; Influence of Family on Decision Making; Resource Limitation; Evidence of Effectiveness

Family members

4

HCPs

15

Devitt et al., 2017

Australia

Patients

146

76 F

70 M

100% Indigenous

Semi-structured interview

Thematic analysis

Explore Indigenous Australian ESKD patients’ knowledge of, and attitudes towards, kidney transplantation

Interest in Transplant as a Treatment Option; Becoming Informed and Communicating with Clinicians and Carers; Family Support in Transplant Decision-Making; Negotiating Cultural Sensitivities

Getchell et al., 2017

Canada

Patients

13

10 F

9 M

miss.

Focus group

Thematic analysis

Provide insights from donors and recipients into the barriers faced during the transplantation process

Lack of Education for Patients and Families; Lack of Public Awareness on LDKT; Financial Cost to Donors; Health Care System-Level Barriers

LDs

6

Gordon et al., 2019

USA

LDs

17

15 F

3 M

100% African American

Focus groups

Thematic analysis

Assess African American donors’ perceptions of APOL1 testing

Decision-Making

about APOL1 Testing; Information Needs about APOL1; Racial/Ethnic Identity; Insurance Coverage of APOL1 Testing

Hart et al., 2019

USA

Transplant candidates

28

12 F

16 M

50% White; 43.2% Black

Semi-structured interviews, focus groups

Thematic analysis

Describe what kidney transplant candidates understand about outcomes on the waiting list and the relative risks and benefits of kidney transplant options

Knowledge Gaps and Misperceptions; Desire for Frank, Individualized Information; Emotional Barriers; Decisional Support Needs

Ho et al., 2022

USA

Recipients

36

76 F

42 M

67% White; 8.5% Black

Prompt-guided stories

Thematic analysis

Identify common experiences and emotional changes shared by LDs and kidney recipients

Recipient: Struggling with Dialysis; Talking to Potential Donor; Feeling Guilty Accepting Donation; Feeling Happy when Someone Offered; Concerned for Donor’s Health; Being Able to Live Normal Lifestyle; Freedom from Dialysis; Closer with Donor; Recovery Process; Grateful for Donor Generosity

LDs: Influenced by Religion; Influenced by Knowledge; Donated to Save a Loved One; Donor Family Concern; Fears and Challenges During Evaluation; Donors Would Donate Again; Happiness for Changing Patient’s Life; Becoming more Altruistic; Taking Better Care of Health; Recovery Experiences; Seeing Recipient Health Improve

Donors

82

Ismail et al., 2013

The Netherlands

Patients

50

25 F

25 M

20% Turkish; 20% Surinamese; 20% Dutch; 14% Moroccan; 14% Caribbean; 12% Cape Verdean

Focus groups

Grounded theory

Investigate the psychosocial and cultural factors that may constitute hurdles to LDKT

Patient Education: Lack of Tailoring, Poor Understanding; Cognitions & Emotions: Concerns & Misconceptions, Fears & Anxiety; Social Influences: Restrictions for Potential Donors; Communication: Patients’ Disinclined Attitude, Socio-cultural Factors

Kayler et al., 2020

USA

Potential LDs

32;

69 F

47 M

61%, White;

35% African American;

4% Other

Focus groups and individual interviews

Iterative process

Develop educational health animations on LKD

Suitability; Acceptability; Usability; Dissemination; Adaptability

Friends/ family

10

Candidates & recipients

74

Keddis et al., 2019

USA

ESRD/post Kidney transplant

12

5 F

7 M

100% Native American; 50% Navajo tribe

Semi-structured interviews

Thematic analysis

Investigate Native American patients’ perceptions and attitudes towards kidney transplants

Experience with kidney transplant education by the healthcare team; cultural beliefs regarding kidney transplant; personal motivation and attitude towards kidney transplant; financial burden of kidney transplant and post-transplant care; attitude about living donation.

Keller et al., 2022

USA

Patients

62

Patients:

Black

13 M

16 F

Non-Black

12 M

21 F

Donors and carers:

Black

3 M

3 F

Non-Black

12 M

29 F

Patients:

47% Black,

53% Non-Black

Donors and carers: 13%

Black; 87% Non-Black

Descriptive study; secondary analysis of transcripts

Content analysis

Identify design and delivery adjustments for culturally adapting educational animations on LDKT originally developed for a diverse audience to better suit the needs of Black Americans

Cognitive barriers to LDKT: ambivalence; lack of knowledge; concern for donor

Communication barriers to LDKT: reluctance to talk; difficulty talking

KidneyTIME Videos as cognitive facilitators: attention-getting; efficient learning; manageable content; positive impact; new knowledge

KidneyTIME Videos as communication facilitators: many dissemination channels; broadly shareable

Donors

36

Caregivers

11

King et al., 2020

USA

CKD (not yet on dialysis)

22; 6

13 F

9 M

100% African American

Semi structured in-person interviews

Thematic analysis

Understand African American patients’ knowledge of RRT options and how patient, provider and system-factors contribute to knowledge and preferences

Limited knowledge of home modalities and deceased donor options; CKD patients gave little thought to choosing RRT options; CKD patients relied on doctors for treatment decisions; while patients reported knowledge of LKDs it did not translate to receiving LKDT.

ESRD and receiving treatment

6

5 F

1 M

Lagging et al., 2022

Sweden

Potential LKDs

15

9 F

6 M

miss.; Swedish

Semi structured interviews.

Content analysis.

To investigate how people close to a person with kidney disease experience receiving a living donation letter.

Feelings evoked by the LD letter: the LD letter does not induce pressure to donate; the LD letter does not affect the relationship between the potential donor and patient; the LD letter makes the receiver feel like an important person.

The LD letter creates clarification and trust: the LD letter clarifies that the decision to volunteer as donor is the letter receivers decision; the LD letter clarifies the patient’s phase in the transplant process; the LD letter unburdens the patient from approaching and informing potential donors.

Opinions and suggestions about the LD-letter and further communication: a letter is preferred as the first step for communication regarding LKDT; opinions and suggestions regarding style and content of the LD letter; opinions and suggestions regarding follow up of the LD letter; needs for meetings about LKDT.

Manera et al., 2017

Australia/

Canada

LDs

123

45 F

78 M

74% White; 12% Asian/South Asian; 7% European

Focus groups

Grounded theory

Describe the expectations and experiences of LDs

Lacking Identification as a Patient; Empowerment for health; Safety net and reassurance; Neglect and inattention of care

Martin, 2014

New Zealand

Patients

193

87 F

104 M

52.9% New Zealand European; 23.5% Māori; 23.5% Pacific

Mixed methods; survey/

semi-structured interviews

Inductive analysis

Examine the preferences and concerns of New Zealand patients who are waiting for kidney transplantation

Preferences: prefer LKD to deceased donor transplant; willing to accept a LKD if offered;

Concerns: donor health problems; painful donor recovery; loss of donor income; donor upset if transplant rejected

McKinney et al., 2021

USA

Candidates social support network

23

17 F

6 M

87% White;

13% Black

Focus groups

Inductive analysis

Characterize the barriers and facilitators social support network members experience in supporting transplant candidates

Advancing ESKD is a disease of the whole support network: Friends and families caring for patients with ESKD feel disconnected from other caregiver and stakeholder communities; families priorities first-hand knowledge about transplant options and expectations from recipients and their families.

Unprepared to make decisions about transplant: difficulty communicating with their patients about ESKD and support roles; patients resisting help due to not wanting to feel like a burden; difficulty understanding the information; feeling helpless/needing guidance on how to help.

Pines et al., 2022

USA

LDs

25

16 F

9 M

Donors:

64% White; 24% Hispanic; 12% African American

Recipients: 44.4% White; 33.3% Hispanic; 22.2% African American

Semi-structured interviews

Thematic analysis

Explore the decision-making and educational needs of KPD donors and recipients, compare the content being delivered to KPD recipients and donors, and discuss any KPD educational recommendations for improvement

Kidney paired donation awareness and decision making: becoming aware of paired donation; perceived benefits that motivated KPD participation; making the decision to purse KPD; quick decisions made with little information; systematic processing.

Recommendations for improvement: key benefits of KPD addressing; key risks of KPD addressing; process to ameliorate challenges to KPD addressing; specifics of donor protection addressing; recommendations for educational improvement.

Recipients

18

4 F

14 M

Pronk et al., 2018

The Netherlands

Recipients

20

12 M

8 F

100% European

Semi-structured interviews

Inductive analysis

Investigate why patients with ESRD decided to solicit a living donor in public and what they experienced during public solicitation

Patients considerations preceding PS: Cautiousness in discussing living donation within social network; Reluctance to accept kidney from loved ones; Rejection/withdrawal of related donor candidates; Moral objections to paid donation; The ease of social media; Encouraged by others; Ends justifying the means; Despair and urge to take action; Public disclosure of vulnerability; Fear of being (perceived to be) selfish; Experiences with public solicitation: Positive emotions and support generated by action; Genuine and ulterior motives for donation; Patients acting as educators and screeners; Time- and energy-consuming process; Emotionally taxing process; Positive interactions with donor candidates; Feeling of dependency and obligation; Limited cooperation from health professionals; Demands a proactive attitude and media strategy

Ralph et al., 2019

Australia

Donors- recipient dyads (pre/post-transplant).

16

Donors

9 M

7 F

Patients 11 M

5 F

81% Anglo-Celtic; 13% Other European; 6% Aboriginal

Longit., semi-structured interviews

Grounded theory/

thematic analysis

Collect longitudinal data on donor and recipient expectations and perspectives of their relationship in LDKT

Analytical decision making to mitigate regret; Donation as enacting familial responsibility for care; Strengthened interpersonal ties; Instability of relational impacts; Renegotiation social roles; Guilt over unmet expectations; Inevitability of the gift relationship

Ruck et al., 2018

USA

LDs

50

26 F

24 M

82% White

Semi-structured interviews

Thematic analysis

Explore and document qualitative insights into the apprehensions, misconceptions, and information-seeking behaviours of LDs in the US

Concerns about and experiences of donation among participants and their families; Taxonomy of donation concerns; Information participants desired prior to donating; Participants’ information-gathering behaviours

Schick-Makaroff et al., 2021

USA

Candidates

11

9 F

2 M

18% White;

9% African American; 9% Hispanic; 36% Asian

Semi-structured interviews; focus groups

Thematic analysis

Investigate the educational elements essential for facilitating an informed decision-making process among LDs

Education Is Contingent Upon and Motivated by Personal Circumstances; Education Is Supported Through Explanation of Risks and Benefits; Education Is Enhanced by Understanding the Overall Donation Experience; Education Is Personalized by Talking to Another Donor

LDs

7

2 F

5 M

57% White; 29% Hispanic; 14% Asian

Shaw, 2015

New Zealand

Directed LDs

19

13 F

6 M

miss.; New Zealand

Semi-structured interviews

Thematic analysis

Identify deficiencies in informed consent process concerning information disclosure and provide recommendations for improvements

Communication and psychological support; Information disclosure: timing of donation process; Post-surgery recovery and support

Non-directed LDs

6

5 F

1 M

Sieverdes et al., 2015

USA

Deceased Donor Recipients

16

14 F

13 M

100% African American

Focus groups/

surveys

Inductive/deductive

Explore perspectives of African American recipients regarding challenges, barriers, and educational needs in pursuing transplant

Concerns About Living Donors; Knowledge and Learning; Expectations of Support; Communication

LD Recipients

11

Skaczkowski et al., 2023

Australia

LDs

17

8 F

9 M

94% Australian;

6% Other; 6% Aboriginal or Torres Strait

Semi-structured interviews

Thematic analysis

Experiences of LDs residing outside metropolitan areas

Donor’s emotional well-being is influenced by the recipient’s outcome; varied levels of access to medical support and other important services in rural areas; travel takes a toll on time, finances and well-being; varied level of financial impact; medical, emotional and social challenges; both lay and health professional support is valued; varied levels of knowledge and experiences accessing information; a worthwhile experience overall

Traino et al., 2016

USA

LDs

81

55 F

55 M

67.9% White; 28.6%

Black; 1.2% Asian/pacific islanders; 1.2%

American Indian Alaskan; 1.2%

Multiracial

Semi-structured interviews

Subgroup analyses/ Latent content analysis/ Statistical analyses

Assess donors’ perceptions of the information provided while considering living donation

Perceived Usefulness of Information; Desire for Additional Information; Understanding of and Satisfaction with Information; Subgroup Analyses for Ethnicity, Education, and Income

Waterman et al., 2020

USA

Patients

40

19 F

15 M

6 miss.

22.5%

White;

50% Hispanic;

12.5% African American;

15% East Asian/Pacific Islander/

Other/

Structured interviews

Grounded theory

Examine barriers to transplant education and preferences based on CKD stage and primary language spoken

Perceived Barriers to Transplant: Confusion about CKD; Lack of transplant knowledge by family/friends; Lack of knowledge about appropriate LDs and fear of risk to LD; Fears about risks of transplant; Fears of being a burden; Financial burdens of ESRD and transplant; Transportation and scheduling challenges; Difficulty using interpretive and medical services for Spanish speakers; Hispanic patients’ medical mistrust and specific concerns about risks for LD; Primary responsibility to pursue transplant on the patient. Transplant Education Preferences and Recommendations: Earlier introduction to transplant education with prevention focus; Benefits of transplant and recovery; How to get on the transplant wait-list; Financial resources for transplant; LDKT information for patients and support persons; Transplant education geared toward family and friends; Offer in-person classes with online options; Make educational resources available in Spanish and classes taught by bilingual educators; Culturally sensitive education; Increase support for patients post-class

Support network

13

7 F

4 M

2 miss.

31% White; 15%

Hispanic; 8% African American; 46%

East Asian/Pacific Islander/

Other

HCPs

10

miss.

miss.