A struggle for recognition and meaning: a phenomenological-hermeneutic study of the illness trajectory of patients undergoing spinal fusion surgery

Research output: Book/anthology/dissertation/reportBookResearchpeer-review

The aim of the present thesis is to explore how patients undergoing SFS experience their illness trajectory.

The literature describes that suffering from back pain is an intrusive element in a patient’s life that profoundly affects the patient and his or her family, friends and job as well. The patients experience lengthy and tiring illness trajectories that come with great personal costs; and several studies demonstrate that life with back pain can be so chaotic and traumatic that some patients develop depression. Patients suffering from back pain describe not being taken seriously and being met with insinuations about trying to cheat their way into social benefits. This seems to create feelings of existential insecurity, doubt and social isolation; and the literature shows that patients undergoing SFS are facing particularly serious challenges because this surgical procedure is usually the last therapeutic option available and because many bring to the encounter distressing experiences from contact with several public sectors, multiple examinations and
previously unsuccessful treatments.

The present study was performed to obtain a comprehensive understanding of patients’ experiences of undergoing SFS. Observations focusing on the interaction between the patients and the healthcare professionals were made in advance to qualify subsequent interviews. Ten patients undergoing SFS participated in two semi-structured interviews – one at the hospital 2-3 days after surgery and one at home 2-3 months after discharge. Consisting of fieldnotes and transcribed interviews, the data material was analysed and interpreted with inspiration from Paul Ricoeur’s phenomenological-hermeneutic theory of interpretation.

The findings are presented in three papers. Paper I is a systematic literature review based on thematic synthesis. The aim was to gain a better understanding of the patients’ illness experiences and to identify, systematise and integrate the findings of different qualitative studies that may elucidate barriers, consequences or focal points in connection with care and treatment of patients with back pain. Paper II aims to explore how patients undergoing SFS experience their illness
trajectory and their interaction with the healthcare system. Paper III aims to explore how patients experience their situation from the point of making the decision to undergo SFS to living in everyday life after surgery.

The thematic synthesis in the literature review points out that we create our identity through experiences and memories. Ignoring the patients’ illness experiences within the healthcare system can therefore be seen as disregarding the patient as a human being, which paves the way for feelings of being marginalised and mistrusted. Respectfully including the patients’ experiences is
fundamentally about acknowledging the patients’ lived experiences. The synthesis of the included studies demonstrates a need for healthcare professionals to pay attention to the patients’ narratives in order to recognise them as human beings. This involves understanding the facts that the body can never be understood as merely a biological entity and therefore that illness is far
more than having symptoms, getting diagnoses and undergoing treatments. A holistic approach with a focus on how the patients hear, understand and ‘dare’ ask questions is therefore proposed. It is found that in many cases, these aspects are being overlooked by the healthcare professionals.

In this perspective, the absence of physical signs is of paramount concern and can create breeding ground for insinuations in regard to the patients being hypochondriacs. This mistrust can induce feelings of invisibility, sadness, emptiness and insecurity. However, talking about such aspects with the healthcare professionals has a pain-relieving effect; hence, the present study shows that it is a turning point for the patients to be recommended and to decide to undergo SFS. Indeed, this is experienced as recognition of the pain - creating feelings of relief and hope which helps them reengage into normal life, becoming once again a resource to family, friends and colleagues. But the study also shows that life with back pain basically has changed the patients’ understanding of themselves and that insecurity and a weakened self-image prevail after surgery in some patients. The patient role has left so prominent a mark on the patients that it is difficult for them to redefine themselves and to create coherence and
meaning in life.

Furthermore, the present thesis shows that due to their life-changing illness trajectories, patients can experience ‘being trapped in pain experiences’; and feelings of powerlessness and of being mistrusted can ‘stick’ within the patients. In addition, increasing pain and functional deterioration can alter the experience of time, leaving the patients with a more complex and multi-dimensional
understanding of time than that commonly governing how the healthcare system is organised temporally. Moreover, it is important knowledge that patients with low socioeconomic status can feel particularly abandoned, experiencing the discharge goals as confusing, unrealistic and in conflict with their own immediate goals. Such aspects should be taken into consideration when healthcare professionals communicate with the patients.

In conclusion and to accommodate the patients’ individual needs, it is crucial to prioritise their everyday experiences. In this context, it is important for the healthcare professionals to understand that the patients’ experiences of insecurity can be so powerful that they can develop into fundamental doubt about their own experiences and judgements and that this can even cause
them to hide their pain not to be a burden. This study emphasises that the recommendation and decision to undergo SFS can create feelings of being recognised and feelings of relief. However, it is important for the healthcare professionals to be aware of the fact that the patient role and the insecurity can be so pervasive that patients may experience difficulties re-defining themselves and creating a new identity. Accordingly, it is crucial throughout the illness trajectory to include existential experiences to understand what gives (or may not give) meaning to the patients.
Original languageEnglish
Place of publicationAarhus
PublisherAarhus Universitet
Number of pages124
Publication statusPublished - 2016

See relations at Aarhus University Citationformats

ID: 109659731