Youth and Pet Survivors: Exploring the Experiences of Pediatric Oncology and Bone Marrow Transplant Patients in a Virtual Animal-Assisted Therapy Pen Pal Program.

Introduction: YAPS™ (Youth and Pet Survivors™) is a form of virtual animal-assisted therapy (AAT), a pen pal program designed for children and adolescents with cancer and/or having a bone marrow transplant (BMT) to engage in virtual visits with a dog or a cat (who has also been treated for cancer or serious medical illness) through letter writing and pictures. The purpose of this qualitative descriptive study was to explore the experiences of YAPS participants over time and to explore how virtual AAT may be an additional or alternative intervention to the traditional form of AAT, which involves live visits with animals, primarily dogs. Method: Open-ended, face-to-face interviews were conducted throughout the participants' involvement with their animal pen pal. Interviews were digitally recorded. Data were analyzed using a content analysis method. Results: Fifteen children and adolescents, aged 7 to 16 years, participated. Three main themes and five subthemes were found, including connection, shared experience, and friendship. Themes suggested that a virtual AAT letter writing program can provide a source of fun and a way to process the cancer experience with a dog or cat pen pal who has also faced cancer or serious medical treatment. Discussion: Interventions that promote well-being for pediatric oncology and BMT patients are needed, and virtual AAT seems to be one such intervention suited for those who have an affinity for animals and enjoy letter writing. The findings of this study also presented an exciting and intriguing gap for further research in virtual AAT.

Understanding the holistic experiences of living with a kidney transplant: an interpretative phenomenological study (protocol).

BACKGROUND: Currently very little is known about the perceptions and experiences of kidney transplant recipients from a qualitative perspective. As highlighted by the European Kidney Health Alliance recommendations, providing holistic care to kidney patients is important however this is currently an unmet care need in renal disease. It is imperative to understand patient experiences to ensure that they are included in key strategies and future renal service planning. Ignoring these important patient views means that there is a significant risk of inappropriate renal service provision and lack of adequate support impacting on overall health. METHOD: A purposive sampling strategy will recruit individuals currently living with a kidney transplant, 6 months to 5 years post-transplant. A maximum of 30 patients will be recruited between two Regional Nephrology units within the United Kingdom via clinical gatekeepers. In-depth interviews will be undertaken with participants living with a kidney transplant across the two sites. Interviews will be digitally-recorded, transcribed verbatim and subjected to interpretative phenomenological analysis. DISCUSSION: Renal healthcare professionals need to understand more than the biological impact of receiving a kidney transplant. Understanding the holistic and multi-domain experiences that these patients experience will help healthcare professionals to recognize the needs of this group and ensure more responsive care.

An exploratory study of the experiences of deceased-donor liver transplant recipients and their need for psychotherapeutic support.

AIMS AND OBJECTIVES: This study aimed to explore the experiences of liver transplant recipients during their journey through the treatment and their need for psychotherapeutic support related to this process. BACKGROUND: Over time, measures of survival and quality of life in liver transplant recipients have continued to improve but their emotional needs remain under explored. In the longer-term recovery from transplantation, the focus shifts from physical health to psychological health. In the UK, there are no known embedded adult psychological services in liver transplant centres to react to this need. DESIGN: A qualitative descriptive design was used. METHODS: Grounded theory analysis was used to study the narratives of six adult liver transplant recipients. Through a process of coding, conceptual categories were established to describe the participant experiences. The study adhered to the EQUATOR checklist, SRQR. RESULTS: Four categories emerged that were related to the experience of liver transplantation for the recipients. These were a process of adjustment, the phenomenon of waiting, liver transplant as a transformative experience and on the value of support. The participants identified a lack of psychotherapeutic support provided by the liver transplant service and felt that an embedded psychotherapeutic service would promote accessing such support during challenging times. CONCLUSION: Through the process of liver transplantation, recipients experience challenges with adjustment, waiting, feeling transformed and they value support with these feelings. In correlation with other studies, the findings of this study highlight the need for providing psychotherapeutic support within liver transplant services. RELEVANCE TO CLINICAL PRACTICE: The study provides evidence to support recommendations for a conjoined psychotherapy service within liver transplant services to support patients with their holistic needs.

Level of Daily Life Activities and Learning Needs in Renal Transplant Patients.

OBJECTIVES: Transplantation affects the patient's psychological state and daily life activities. Although there are various studies regarding the quality of life of patients, there are limited studies on the daily life activities and learning needs of patients after renal transplant. Here, we investigated the daily life activities and learning needs of patients after renal transplant. MATERIALS AND METHODS: This descriptive and cross-sectional study was conducted on 120 renal transplant recipients. Data were collected using the "Patient Information Form," the "Nottingham Extended Activities of Daily Living Scale," and the "The Patient Learning Needs Scale." Data were evaluated with t test, analysis of variance, and Pearson correlation analyses. RESULTS: In our patient group, the mean general health score was 6.8 ± 2.34, and the fatigue score was 4.53 ± 2.88. Although 66.7% of our patients reported that they had information about the drugs that they used, 58.3% could not answer questions regarding the most important adverse effects of their drugs. We found that 20% of the patients had a respiratory problem, 34.2% had sexual problems, and 26.7% had sleep problems. The average Nottingham Extended Activities of Daily Living Scale levels were lower in patients with only primary school education, patients who did not work, and patients with other illnesses. Learning needs of patients were as follows in order: quality of life, feelings related to the conditions, treatment, and complications. CONCLUSIONS: Our study patients reported that their overall daily life activities and quality of life, given the holistic approach to treatment and care, were good. However, when we examined each activity separately, our findings showed that patients lacked information regarding how to cope with stress, emotions, and the effects of renal transplant on their life.

Evaluating the feasibility of a nurse-led self-management support intervention for kidney transplant recipients: a pilot study.

BACKGROUND: To support effective self-management after kidney transplantation, a holistic nurse-led self-management support intervention was developed using the Intervention Mapping approach. The primary aim was to evaluate the feasibility, acceptability and fidelity of the intervention for kidney transplant recipients and professionals. The secondary aim was to explore preliminary effects on outcomes. METHODS: A pilot study was conducted in 2015-2017 to evaluate the intervention. Nurse Practitioners (NP) guided recipients in assessing 14 life areas using the Self-Management Web. Participants were supported in developing self-regulation skills which can be applied to self-management of the illness. Strategies included goal setting, action planning, and promotion of motivation and self-efficacy. Adult recipients from an outpatient clinic of a Dutch University Hospital who underwent their transplant at least 1 month ago, were invited to participate. NPs, nephrologists and recipients were interviewed to assess feasibility, fidelity and implementation experience. Consultations were videoed and analysed to assess fidelity. To assess the preliminary effects, the intervention group completed baseline (T0) and follow-up (T1) questionnaires on self-management behavior, self-efficacy, quality of life and quality of care. A historical control group of kidney transplant recipients completed the same questionnaires at T1. RESULTS: Twenty-seven recipients agreed to participate in the intervention group, of which 24 completed the intervention and 16 completed baseline and follow-up surveys. The control group consisted of 33 recipients. Professionals and recipients appraised the open, holistic focus of the intervention as a welcome addition to standard care and felt that this helped to build a relationship of trust. Recipients also felt they became more competent in problem-solving skills. The within-group analysis showed no significant increase in patients' self-management skills. The between-groups analysis showed significantly higher medication adherence among the intervention group (P = 0.03; G = 0.81). The within-groups analysis showed a significantly higher perceived quality of care (P = 0.02) in the intervention group. CONCLUSION: This holistic nurse-led self-management support intervention was found to be feasible and acceptable by professionals and recipients alike. This pilot had a small sample therefore further research is needed into the potential effects on self-management behavior and well-being of transplant recipients. ISRCTN Trial Registry: ISRCTN15057632 (registered retrospectively on 20-07-2018).

Marine n-3 Polyunsaturated Fatty Acid Supplementation and Quality of Life After Kidney Transplant.

Marine n-3 polyunsaturated fatty acids (PUFAs) may improve cardiovascular, renal, and mental health. No previous trial has investigated the effects of marine n-3 PUFA supplementation on quality of life (QoL) indices after renal transplant. METHODS: In this trial, 132 renal transplant recipients were randomized to receive daily either 2.6 g of marine n-3 PUFAs or an equivalent dose of olive oil (controls) on top of standard care for 44 weeks. We used a Short Form 36 (SF-36) questionnaire at baseline (8 weeks post transplant) and at the end of the study (1 year after transplant) to assess QoL. Results were expressed as net change (Δ) in SF-36 individual and composite mental and physical scores during follow-up. RESULTS: We found no improvement of Δ SF-36 individual or composite scores after marine n-3 PUFA supplementation compared with controls. In per-protocol analysis, patients who received marine n-3 PUFAs had a Δ emotional role function (mean, 17% [SD, 50%] vs mean, 3% [SD, 37%]; P = .11). In addition, plasma marine n-3 PUFA levels showed a weak but statistically significant correlation with Δ composite mental function score (r = .18; P = .04). CONCLUSION: Marine n-3 PUFA supplementation did not improve QoL after renal transplant.

Improvement of fatigue after vitamin D supplementation in kidney transplant recipients.

Low serum levels of vitamin D have been associated with fatigue in both healthy and clinical populations. Our aim was to evaluate the effect of vitamin D supplementation on fatigue in kidney transplant recipients (KTRs). In total, 137 patients after kidney transplant and 119 age- and sex-matched healthy volunteers were recruited. Serum levels of 25-hydroxyvitamin D (25(OH)D) were measured by competitive protein-binding assay. Fatigue was assessed using the subscale fatigue of the Checklist Individual Strength (CIS). Of all KTRs, 60 patients without initial vitamin D3 supplementation were started on vitamin D3 supplementation (cholecalciferol) 800 IU/d, with a follow-up examination after 3.0 to 9.0 months (mean, 6 months). Fatigue was found in 40.1% of KTRs. Serum 25(OH)D levels were inversely and independently associated with CIS scores in KTRs (P = .002). In the 60 patients who received vitamin D3 supplementation, 25(OH)D was overall increased at follow-up with 18.5% (P = .004) and CIS scores improved with 10.0% (P = .007). As vitamin D has beneficial effects on fatigue scores in KTRs, we suggest monitoring this parameter in KTRs and supplementation with vitamin D3 when vitamin D levels are low.

When Opportunity Knocks Twice: Dual Living Kidney Donation, Autonomy and the Public Interest.

Living kidney transplantation offers the best treatment in terms of life-expectancy and quality of life for those with end-stage renal disease. The long-term risks of living donor nephrectomy, although real, are very small, with evidence of good medium-term outcomes. Who should be entitled to donate, and in which circumstances, is nevertheless a live question. We explore the ethical dimensions of a request by an individual to donate both of their kidneys during life: 'dual living kidney donation'. Our ethical analysis is tethered to a hypothetical case study in which a father asks to donate a kidney to each of his twin boys. We explore the autonomy of the protagonists, alongside different dimensions of the public interest, such as the need to protect not only the recipients, but also the donor and even the wider community. Whilst acknowledging objections to 'dual-donation', not least by reference to the harms that the donor might be expected to endure, we suggest there is a prima facie case for permitting this, provided that both donor and recipients are willing and that due attention is paid to such considerations as the autonomy and welfare of all parties, as well as to the wider ramifications of acting on such a request. We argue for broader interpretations of the concepts of autonomy and welfare, recognizing the importance of relationships and the relevance of more than merely physical well-being. Equipped with such a holistic assessment, we suggest there is a prima facie case for allowing 'dual living kidney donation'.

The role of narrative medicine in pregnancy after liver transplantation.

UNLABELLED: Narrative medicine allows professionals from all fields of medical sciences to understand the patient's total experience of illness, and meet his/her needs in an empathetic environment. Narrative medicine helps spread holistic knowledge of a multitude of complex clinical conditions, including transplantation. OBJECTIVE: To underline the role of narrative medicine in women who become pregnant after a liver transplant by using their narrations of this very special experience. METHODS: We describe our study with narration and listening to the stories of three women expecting their first child after a liver transplant, by analysing the structure and role of narration in the context of relationships between patients and caregivers. The narrations were transcribed verbatim with the main plot analysed in order to address all the aspects of this rare clinical condition and the transition to parenthood. RESULTS: The women narrated this experience in three phases: transplantation, pregnancy and delivery, and post-partum. They described all phases of pregnancy as stressful but satisfying, whereas the fact of becoming a mother was perceived as a victory both as a woman and as a transplant patient. CONCLUSIONS: Our results suggest that narrative medicine represents a significant professional tool for caring for transplant patients during pregnancy.

Caring dilemmas and coping strategies for organ transplant recipients and their families: perspective of health professionals in Taiwan.

BACKGROUND: Organ transplant health professionals (OTHP) are challenged by more and more sophisticated caring dilemmas raised by organ transplant recipients (OTR) and their families. The purposes of this study were to explore caring dilemmas and the reliable coping strategies applied by OTHPs in Taiwan. METHODS: A qualitative design was used with a purposive sample of OT surgeons and nurses. Data were collected by face-to-face in-depth interviews and analyzed by content analysis. RESULTS: Sixty subjects (43 females, 17 male) participated in this project. They were 16 OT surgeons and 44 nurses, including RNs (n = 29), nurse practitioners (NP, n = 6), and assistant/head nurses (n = 9). Their ages ranged from 25 to 66 (mean = 38.2) years old. Their OT careers ranged from 3 to 40 (mean = 24.7) years for OT surgeons and 0.5 to 15 (years = 4.3) years for the nursing group. Five types of coping strategies for caring dilemmas were reported: (1) developing clinical paths for complex multiple-OT cases, (2) developing OT-expert training programs for interdisciplinary team members, (3) integrating acute and long-term care teams for difficult OT cases and families, (4) holding case conferences for successful and failed cases, and (5) implementing humanistic care training programs. CONCLUSIONS: The findings of this research provide important coping strategies that can help empower OTHPs to care for complex multiple-OT cases with humanitarian expressions. More discussion about cultivation of interdisciplinary OT experts programs, and integration of caring resources are needed in the near future.

Holistic care for pediatric organ transplant recipients and their families during their dark postoperative recovery stage in the hospital.

INTRODUCTION: This study explored the difficulties in caring for pediatric organ transplant recipients (POTR) and their families during dark recovery experiences (DRE) in the hospital from the perspectives of Taiwan organ transplant health professionals (OTHP). METHODS: A qualitative design was used, with a purposive sample of OTHP including OT surgeons (OTS) and nursing groups. Data were collected by thorough face-to-face interviews and were analyzed using content analysis. RESULTS: Fifty-five subjects (39 female, 16 male) participated in this project. They included 15 OTS and 40 nurses. The nurses included registered nurses (n = 27), nurse practitioners (n = 5), and assistant or head nurses (n = 8). Their ages ranged from 25 to 66 (mean = 38.4) years old. Thirty-eight (69%) had college education, and 17 (31%) had graduate education. Their OT careers ranged from between 3 to 40 (mean = 23.8) years for OTS, and 0.5 to 15 (mean = 4.10) years for the OT nursing group. Five types of caring difficulties were reported: (1) threat of OT failure, (2) work overload, (3) insufficient collaboration within interdisciplinary teams due to incongruent surgical and nursing opinions, (4) poor communication between OTHP and POTR, and (5) lack of competent professional OT care. CONCLUSIONS: The following suggestions were made to help relieve the OTHPs' stress in providing holistic care for POTR and their families during DRE: (1) increasing the amount of experienced OT manpower and professional communication liaisons, (2) providing systematic on-the-job interdisciplinary case seminars and OT workshops, and (3) enhancing the POTR's mental health care and helping manage their distress of DRE.