Ambivalent Lived Experiences and Instruction Need of Patients in the Early Period after Kidney Transplantation: A Phenomenological Study.

Author: Dietmar Wiederhold, Gero Langer & Margarete Landenberger

Journal: Nephrology Nursing Journal, 38(4), 417-423

Date of Publication:    September-October 2011

Introduction:

 The literatures show that quality of life for patients with kidney transplant is significantly improved compared to hemodialysis patients. However, there is some psychological impairment for patients with kidney transplant associated with taking immunosuppressive drugs and adaptation with new organ.

This qualitative research paper is reviewed to gain understanding on reality of post-renal transplant patients’ perspectives and experiences.

Purpose of the study:

This study was conducted to facilitate a deeper understanding of patient-reported experiences with the disease and to provide information on further need for help and support from patient’s point of view.

 Method:

The study is phenomenological basis looking for the similarities and patterns in experiences. The samples included 10 participants, ages between 41 to 66 years. The study subjects are patients receiving first transplantation with an organ from post-mortem donor and showing stable kidney function who did not require dialysis.

The subjects were in-patients who had not yet received structured education at the time of survey. Data were collected by semi-structured interview. Open-ended questions were used focusing on the main topics of the research. The first author conducted interviews in each patient’s single room between the 7^th and 21^st day after transplantation. Interviews were recorded and transcribed.

 Data analysis:

Data analysis was done after the survey, according to the descriptive phenomenological method of Coaizzi. Data validation was done by second investigator and a written survey. Three participants took part in the survey, and they agreed completely with the description of their experiences.

Findings:

The result showed that “the experience of patients after allogenic kidney transplantation is a complex phenomenon” and “the essential structure of experience is revealed as a feeling of being torn” (Wiederhold, Langer & Landenberger, 2011, p.419). There are six sub-themes; weighing dialysis against transplantation, experience of positive changes, dealing with the organ, experience of impairments and worries, experience the self confidence and experience the need for support.

Studying experiences of patient after transplantation is important to understand patients’ perspectives in need of care and support. This study finding provides better understanding for the situation of kidney recipients, which is important for healthcare professional to support and care for the patients according to their needs. The concept of patient-centered care is to provide care with what matter most to the patients and their family. The areas of support mentioned by the participants create awareness of patients concerns.

 Strengths and limitations

As a nature of qualitative study, this phenomenological study provides thick descriptions about the experience of patient after transplant showing stable kidney functions. It provides deep understanding about ambivalent lived experiences of patients in the early period after kidney transplantation.
Semi-structured interview with open-ended questions were used focusing on main topic of research interest. This allows participants describe their subjective perceptions openly. The researcher observed the constant recurrence of experiences recounted by the participants, and interviews had been conducted until there was no new facts appear. This allows researcher identifying the similarities and patterns in post renal transplant experiences, from which nursing intervention can be developed to improve patients’ outcome. Thrust worthiness is performed by data validation with second investigators and member checking; written survey taken part by three participants.
This study does have limitations that the outcome variables cannot be quantified and the result cannot be numerically presented. Using between method triangulation might improve validity of the result.

 Nursing Implication

Understanding the sub-themes of the phenomenon will help nursing and healthcare professionals grasp clear picture of participants’ perspectives.

 Weighing dialysis against transplantation:

The participants stated that the news of having been allocated a donor kidney happened to get mix feeling among recipients. They felt hopeful improving quality of life, and at the same time, they were fear of uncertainty for successful kidney transplantation and positive changes. This ambivalent attitude remained unresolved even after transplantation that the patients are often afraid of rejection and other complications. The authors assumed that this experience of “feeling of being torn” and lack of knowledge among patients contribute to passive expectation regarding help and support. Cross-sectional study done by Chen, Weng & Lee (2010) showed that post renal transplant are dealing with stresses related to uncertainty, limitations, complication and interactions.
Understanding these feelings and attitudes of transplant patients, renal nurses should provide care and support in most sensitive way. Patients with higher self-efficacy related to post transplant self-care behaviors have lower stress related to uncertainty and interaction (Chen, Weng, & Lee, 2010). They suggested useful strategies to improve self management: Mastery experience; working together with patient in setting realistic goal achieve self-care behaviors, Vicarious experiences; establish focus group giving patient opportunity to share their experiences, Social persuasion; encourage family members and relatives to participate in post renal transplant care program, and Re-explanation of somatic and emotional state; discuss with patients and family about physical and psychological problems after transplant and side effects of immunosuppressant.

 Experience of positive changes:

After successful kidney transplantation, the patients experienced a new stage in life characterized by gratitude towards the donor and feeling of joy with expectation to be able to lead normal life. A new stage of life for patients is initiated with the resumed of urine production, subsequently followed by increased performance. Patients are in euphoric mood which is described as “honeymoon phase”. This great euphoric mood is connected with difficulty in identifying future set of actions to deal with new organs, which is leading to cause inadequate psychological adaptation and inability to estimate possible consequences of immunosuppressive therapy.
Therefore, reality-oriented patient education program such as exercise, training and instruction is recommended to produce everyday competence in patients. This will enhance patients’ understanding of their problems and their abilities to react with restrictions and complications.

 Dealing with the organ:

In the early stage after transplantation, emotional coping and psychological acceptance of new situation is nearly started. At the beginning, experience of receiving newly functioning kidney causes insecurity for part of responsibility which had been taken over by dialysis machines for years. This reveals that post renal transplant patients are required to gain confidence for dealing with new organ and taking responsibility for themselves.
Therefore, patient teaching program should emphasize on development to self determined behavior to get confidence and control over their future set of actions. Discussion about positive coping strategies will increase self management ability (Chen, et al., 2010).

 Experience of impairments and worries

The authors found out from this study that some patients had adjustment problem related to the increased liquid intake and urination. Patients are very cautious and they try to recognize the possible damage and returning to the life of regular dialysis. Patients were concerning about employment, financial management and securing their standard of living. Understanding these worries and concerns of patients helps care givers put more effort to support patients to attain optimal level of self management.

 Experience of self-confidence:

The authors also found out that there is great self-confidence to cope with the situation. The positive changes to live independent of dialysis encourage patients to view their new situation optimistically, which is important for patients to treat their functioning kidney with great care. Taking advantages of this strength of patients’ optimistic view and having self-confidence, health educator can provide detail and clear information on care of their new organ which should address very early during their hospital stay. Interventions to promote positive coping strategies is required to employed, in order to maximize quality of life after transplant (White & Gallagher, 2010).

 Experience the need for support:

This study showed that the patients have little idea about how to cope with new kidney and they expect active support systems. They expected support mainly on the area of dealing with the transplant and the information in dealing with medication. Patients also have a need for consultation in vocational rehabilitation, possibility of part-time jobs, and financial support achievement.
Understanding patients’ need for social support, nurses and healthcare team need to communicate with social workforce organizations to help post-kidney transplant patients are achieving high quality of life. White & Gallagher  (2010) stated that recipient’s ability to return to work and their social support networks are important factors to consider in maximizing post transplant quality of life.

 Contents for health education:

These topics for health education mentioned by patients are related to psycho-emotional problem, diet, medical problems such as self monitoring of body functions and complications, physiotherapy, and social law such as financial support and pension advisory. Furthermore, patients are demanding for concrete, tangible and everyday practice recommendations.
The contents for patient education described by the participants are helpful for care givers for structuring health education. The description from patients can be considered to include with additional important contents.

 

Conclusion:
This study finding provides important insights to understand the live experiences of post-renal transplant patients. Understanding the patient’s perspective on their needs for supports and their perceived requirements for health education enable healthcare providers to provide more comprehensive care and support with the concept of patient-centered care. However, this research finding is applicable only for the patients groups in acute wards, showing stable kidney function and free from complications. Further research is recommended to critically evaluate these study findings through interventional studies. Another recommended study is to explore experiences of transplant experiences in different context such as long-term transplant survivors.

References

 Chen, K., Weng, L., & Lee, S. (2010). Stress and stress-related factors of patients after renal transplantation in Taiwan: a cross-sectional study. Journal of Clinical Nursing, 19(17/18), 2539-2547. doi: 10.1111/j.1365-2702.2009.03175.x

White, C., & Gallagher, P. (2010). Effect of patient coping preferences on quality of life following renal transplantation. Journal of Advanced Nursing, 66(11), 2550-2559. doi: 10.1111/j.1365-2648.2010.05410.x