EXPERIMENTAL AND CLINICAL TRANSPLANTATION

Objectives: Understanding a patient’s perspective has received increased attention. Awaiting heart transplant remains a great challenge, not only for patients and their families but also for health professionals. This particular challenge has multiple aspects, the most important being the psychological one. Understanding candidates for heart transplant is vital for all caregivers. In this study, our aim was to present the individual’s experience of awaiting heart transplant.

Materials and Methods: Structured interviews and the Pictorial Representation of Illness and Self Measure, Hospital Anxiety and Depression Scale, the Illness Cognition Questionnaire, and the Illness Perception Questionnaire-Revised measurements were performed in 2 male patients (60 and 61 years old) who were on heart transplant wait list.

Results: The patients expressed their concerns and perceived severe consequences of heart disease. They also demonstrated the importance of significant others and hope. The results suggest the existence of realistic cognitive pictures of the disease. The patients revealed high sense of control along with the awareness of being dependent on fate. The lack of severe anxiety and depressive symptoms along with high perceived benefits’ scores suggest the existence of an adaptation process.

Conclusions: Awaiting heart transplant appears to be a multidimensional phenomenon. The paradoxic configuration of a high sense of control along with the awareness of being dependent on fate was apparent. Significant others and hope seem to be of great importance. The Pictorial Representation of Illness and Self Measure allows a better understanding of a patient’s perspective and allows the patient to share personal views. The individual approach provides opportunities that go far beyond routine clinical assessment.

Key words : Illness perception, Pictorial Representation of Illness and Self Measure, PRISM

In recent years, attention has been turned toward the patient’s perspective of living with chronic disease. This has allowed increased emphasis on patient needs, expectations, and patient-reported outcomes.^1-3 The exploration of aspects beyond clinical factors is of a great importance,1 as knowing patients’ perspectives allows the caregiver to understand better the effects of chronic illnesses on patients’ lives.^4-5 The pretransplant period constitutes one of the most challenging life situations, generating extreme stress.^4,5 Apart from physical suffering, the psychological consequences of waiting for transplant are undoubtedly vital.^4,6,7 This unique experience seems to be worth a deeper exploration, which may lead to improved care.

Materials and Methods

We present the personal experiences of 2 men (age 60 and 61 years) who were waiting for heart transplant. Clinical and sociodemographic data of the participants are presented in Table 1.

During psychological consultation, the Pictorial Representation of Illness and Self Measure (PRISM) (prisimum GmbH, Zürich, Switzerland) was used to explore the patients’ perceptions of illness burden. This measure consists of a white A-4 size board with a yellow circle 7 cm in diameter fixed in the bottom right corner representing the “self.” The patient is handed a red disc 5 cm in diameter representing the illness and is asked to place it on the board with the following instruction: “Please imagine that this board is your life at the moment. Where would you place this disc to show me how important the illness is in your life right now?” In the present study, we used the PRISM+ version.⁸ To assess the emotional state and illness perception, we used the Hospital Anxiety and Depression Scale (HADS),⁹ the Illness Cognition Questionnaire,^5,10 and the Illness Perception Questionnaire-Revised (IPQ-R).11 The study protocol conforms to the ethical guidelines of the 1975 Helsinki Declaration and was approved by the university ethics committee. Written informed consent was obtained from the participants.

Figure 1 and 2 show the configuration of PRISM discs performed by the patients. The comments provided by the participants are shown in the legends. The results from the applied questionnaires are shown in Table 2.

For patient 1, depression score indicated mild symptoms, and the level of anxiety was within normal level. Results suggest that the patient perceived the illness to be rather chronic, having severe consequences but at the same time controllable by treatment. He indicated that he understood it well and had control over it. He admitted that the illness brought positive value; nevertheless, the level of helplessness was high and illness acceptance remained low (Table 2).

For patient 2, both depression and anxiety scores were within normal levels. Illness Cognition Questionnaire results revealed low level of helplessness, high level of acceptance, and perceived benefits. The results from the IPQ-R measurement indicated low emotional response to the illness. The patient perceived his illness as moderately controllable by treatment and short. He declared high illness coherence and perceived control. Attention should be paid to the high levels of hope and acceptance as well as the ability to benefit (Table 2).

By presenting the personal experiences of patients, we attempted to emphasize the psychological dimensions, which may not be fully appreciated in routine clinical care.² Exploring the factors of great importance to our patients enhances understanding of a patient’s perspective, which may benefit in improved, multidimensional care. Undoubtedly, to our patients, being on heart transplant wait list and the illness itself are the dominating aspects of their lives. Being close to significant others is also of great importance. Interestingly, we can identify 2 conflicting areas when exploring the patient’s perspective: on the one hand, the patients are aware of the somatic condition severity, unpredictability of the situation’s progress, and inevitability of transplant, and they display a realistic cognitive picture of the disease. On the other hand, they declare a high level of perceived control over the illness, which seems to be related to their knowledge, compliance, and medical care. At the same time, the patients seem to be aware of the extent to which their future depends on fate, destiny, or God. However, the overpowering hope related to force majeure, being beyond control, does not determine hopelessness and helplessness. The awareness and sense of control seem to be a part of the patients’ autonomy, especially vital in terms of decision-making with regard to the heart transplant.^4,12 Our results suggesting that hope, illness coherence, and perceived control favor a lower level of depression and anxiety are in accord with other authors’ conclusions.¹³ Interestingly, one of the patients made a distinction between putting up with the illness and acceptance, the meaning of which has received attention in literature.⁵ In our patient’s opinion acceptance means surrender. This observation proves the importance of defining terms to enhance patient-clinician communication.

Aside from the research aims, the usefulness of PRISM is worth mentioning. The patients’ configurations expose the most important factors as the closest to the “self.” By performing PRISM in nonstandard way and making patients choose and name the preferred elements of illness and life, we approached the essence of their experiences and facilitated sharing of their feelings. As studies have revealed, the application of PRISM seems to be valuable for diagnostic and therapeutic purposes, as well as a tool facilitating clinician-patient communications.8 Pictorial Representation of Illness and Self Measure may also make patients focus on positive aspects of experiencing a chronic disease, which can be helpful in going beyond the unfavorable perception of illness.⁵ It is also worth emphasizing that the use of both quantitative and qualitative methods allows more opportunities to explore a patient’s perspective.¹⁴ One should realize the extent to which experiencing a chronic illness may be traumatic for the individual patient but also constitute the source of positive growth.8 Understanding a patient’s perspective, respect for their hope and autonomy, and enhancing positive illness cognition may result in adaptable coping abilities, mental well-being, and treatment compliance.^5,13,15

Volume: 15 Issue: 6 December 2017

FULL TEXT