Key words : Art therapy, Kidney transplant, Nursing, Patient experiences, Pediatric

Introduction

Children who proceed through the adolescent years of their lives without health problems are more likely to become physically and mentally healthy adults. Children undergoing kidney transplant are at high risk of future psychiatric, academic, and social problems. Some factors that adversely affect the quality of life of pediatric kidney transplant recipients are absenteeism from work or school, organ rejection, and side effects (eg, fatigue, headache, weight gain, physical changes).¹

The Organ Procurement and Transplantation Network database (accessed September 2017) reports that 416 785 kidney transplants have been performed in the United States since January 1988. Of those transplants, 21 538 (5.2%) were performed on recipients younger than 18 years of age.² In the Turkish Nephrology Association’s registry report, according to the Ministry of Health data, the number of adolescent kidney transplants was 329 in 2019 and 170 in 2020.³

Pediatric kidney transplant recipients can have poor cognitive performance.⁴ Long-term school absenteeism, fatigue, attention deficit, and neurocognitive difficulties may contribute to poor academic performance.⁵ Nearly 8 in 10 adolescent kidney transplant recipients do not adhere to posttransplant medical recommendations (75%), which may lead to adverse health outcomes despite high success rates in surgery. Poor family functioning includes poor cohesion and dysfunctional family dynamics.⁶ Transplant recipients may experience many posttransplant stressors, including adherence to complex drug regimens and uncertainty regarding postoperative health outcomes.

With this study, we aim to guide health services by identification of the mental, physical, and social conditions associated with children’s quality of life to better understand the experiences of pediatric kidney transplant recipients and to help them lead better lives in adulthood.

Materials and Methods

Aims
There is only a small body of evidence on the experience of pediatric kidney transplant recipients who face numerous problems during the transplantation process. We need to describe those problems and provide more evidence. Therefore, this study will focus on statements from pediatric kidney transplant recipients’ statements and Mandala art therapy to better understand what kind of problems they go through and what it is like for them to grow up with a new kidney.

Design and methodology
There are 2 types of phenomenological research: the descriptive method of Husserl⁷ and the interpretive phenomenology method of Heidegger.⁸ Husserl’s phenomenological qualitative approach allows researchers to actively access a topic, understand a phenomenon in depth, and reach the central core of reality.^7,9 In contrast, Heidegger’s hermeneutic phenomenology approach allows researchers to identify and interpret people’s perceptions of a topic or phenomenon.⁸ Our study will adopt a descriptive phenomenological design and thematic analysis approach based on Husserl’s philosophy. This descriptive phenomenological approach will help us understand the experiences of children who grow to adulthood with a new kidney.

Participants and setting
The sample will consist of kidney transplant recipients aged 12 to 18 years admitted to the pediatric nephrology polyclinic of a 1000-bed university hospital in southern Turkey. Participants will be recruited using purposive criteria sampling. The inclusion criteria are being a kidney transplant recipient aged 12 to 18 years, having received a kidney transplant at least 1 year ago, having no problems or medical devices that prevent drawing Mandala artwork, and speaking and understanding the Turkish language. The exclusion criteria are having communication problems and mental problems that prevent data collection.

Participants will be interviewed face-to-face in the meeting room of the polyclinic according to the preventive measures mandated in response to the COVID-19 pandemic. All equipment (eg, crayons, a piece of paper, a ruler, a pair of compass drawing tools) will be provided by the researchers.

Data collection and procedure
The data will be collected during a period of 6 months through in-depth interviews and Mandala drawing activities. The nurse of the nephrology polyclinic (who is also the fifth author of this study, EC) will escort the kidney transplant recipients who meet the inclusion criteria into the meeting room. The researchers will inform the kidney transplant recipients and their parents regarding the research purpose and procedure and obtain informed consent from those who agree to participate in the study. The parents will wait outside so that participants can express themselves freely during the interviews. Two authors (BNT and MVD) who are research specialists in pediatric and surgical nursing will conduct each interview and Mandala drawing activity face-to-face. The data will be collected using a 12-item demographic characteristics form and a semi-structured interview guide developed by the researchers based on a literature review^10-12 (with questions such as, Can you tell us about your experiences with your new kidney? Can you tell us about your Mandala?).

Participants will use crayons and paper to create their Mandala drawings. The first author (BNT) will instruct participants on how to draw Mandala. She will tell them that the activity is not about drawing a beautiful Mandala but about expressing their emotions and inner worlds.¹³ She will then ask them to start drawing their Mandala from the inner part of the figure. She will not tell them how to draw the Mandala or what colors to use. She will let them convey their inner worlds through Mandala. She will not interrupt the process unless a participant asks for help. After a participant is done with their Mandala, the researcher will ask them to talk about it. The artworks produced by Mandala art therapy allow researchers to understand the mental workings of those who draw them.¹⁴ This is why this study focuses on Mandala art therapy. The researchers will record and transcribe all interviews verbatim and then check the transcriptions for accuracy. Each participant will be interviewed once, which is estimated to last about 60 minutes.

Statistical analyses

First, the demographic data will be analyzed using descriptive statistics. The interviews will be transcribed in Turkish. The qualitative data will be analyzed using the 7-stage qualitative analysis method described by Colaizzi,¹⁵ which is suitable for the descriptive phenomenological design we have chosen for our study.^9,16

Ethical considerations

The study has been approved by the clinical research ethics committee of the university. Permission has been obtained from the hospital and clinic (document ID No. 2021/676). The sample will consist of data from kidney transplant recipients aged 12 to 18 years. Therefore, both pediatric kidney transplant recipients and their parents or guardians will be informed about the research purpose and procedure, and informed and signed consent will be obtained from those who agree to participate in the study. Pediatric kidney transplant recipients and their parents or guardians will be given adequate time to read the explanation and ask questions. Participants will also be informed that participation is voluntary, that the data will be used only for scientific purposes and will not be shared with third parties, and that they can withdraw from the study at any stage. Each participant will be assigned a code (eg, participant 1, abbreviated as P1) for confidentiality. Each research stage will comply with the ethical principles outlined in the Declaration of Helsinki.¹⁷

Rigor

Rigor was based on 4 criteria: credibility, transferability, dependability, and confirmability.¹⁸ For credibility, researchers will conduct a literature review to develop a semi-structured interview form. In addition, they will objectively evaluate the transcripts and ignore their own interpretations. They will use the semi-structured interview form to collect data. They will avoid all kinds of actions that may distract or influence participants during data collection. For credibility, a professional translator will translate the findings from Turkish into English. The researchers will compare the English and Turkish versions. They will discuss the versions until they reach a consensus regarding the English version. For transferability, they will present all findings without any interpretation. They will code the data for each respective participant separately. The researchers will discuss the codes until they reach a consensus. An independent specialist in qualitative research will check the entire data set for confirmability.

Results, Objectives, and Discussion

Researchers should consider the limited evidence on pediatric kidney transplant and conduct international studies on a sound methodological basis.^11,19,20 We need to understand the experiences of pediatric kidney transplant recipients and gain insight regarding their personal perspectives of their life with a new kidney. In this way, we can help pediatric kidney transplant recipients experience fewer physical, emotional, and psychological problems. To achieve this, we suggest that researchers focus on the inner worlds of those pediatric kidney transplant recipients and encourage them to disclose the feelings they have difficulty expressing.

This study will employ a qualitative research design, because it focuses on a sensitive topic and explores experiences and phenomena.²¹ We will adopt a descriptive phenomenological approach, because we aim to actively access the topic of interest, understand the phenomenon in detail, discover the otherwise hidden reality within the minds of participants.⁹ To further strengthen the truth-finding process, the researchers will conduct individual interviews and facilitate each participant’s creation of a Mandala artwork.¹³ In this way, the researchers will obtain a deep understanding of the experiences of pediatric kidney transplant recipients, address their thoughts on progressing through life with a new kidney, and reveal hidden emotions. In addition, all research stages will involve various methodological methods to minimize bias and increase reliability. The researchers will use the Consolidated Criteria for Reporting Qualitative Research standards to report results clearly and comprehensively.²² Pediatric kidney transplants have been performed for more than 5 decades.² This study will contribute to the literature by exploring the experiences of kidney transplant recipients aged 12 to 18 years.

We think that this study will provide important results regarding the experiences of pediatric kidney transplant recipients and pave the way for further research.

Limitations
This study has 2 limitations. First, the sample will consist only of kidney transplant recipients aged 12 to 18 years. We will not recruit younger children, because we need participants who have attained sufficient mental development to effectively use Mandala art therapy for personal expression of thoughts and emotions. Second, the study will be conducted in a single center.

Conclusions

This study, to our knowledge, will be the first to focus on Mandala art therapy and the experiences of pediatric kidney transplant recipients and what it feels like to grow up with a new kidney. Our results will help researchers understand what pediatric kidney transplant recipients are going through and what it means for them to live with a new kidney. Mandala art therapy can help pediatric kidney transplant recipients express their feelings and thoughts that they cannot otherwise express.

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