Purpose: This Paper Reports a Study Exploring the Lived Experience of Fifteen Men and Women

The Immediacy of Illness and Existential Crisis: Patients' Lived Experience of under-going allogeneic stem cell transplantation for haematological malignancy. A phenomenological study

Elizabeth Dunn, Guy’s and St Thomas’ Foundation Trust

Anne Arber, University of Surrey

Ann Gallagher, University of Surrey

European Journal of Oncology Nursing 21 (2006) 90-96

Abstract

Purpose: This paper reports a study exploring the lived experience of fifteen men and women treated with allogeneic stem cell transplant (SCT) for haematological malignancy.

Method: The study followed an interpretive phenomenological methodology using semi-structured interviews. Participants aged between 22-68 years were purposively recruited from two specialist treatment centres and were interviewed within three months to one year post SCT between April and September 2013. Data were then analysed using interpretive phenomenological analysis.

Results: An overarching theme that emerged from the data was: The Immediacy of Illness and Existential Crisis. The Immediacy of Illness and Existential Crisis developed from participants' experiences of critical events accompanied by enduring uncertainty continuing into the recovery period. Participants suffer major disruption to their lives physically, psychosocially and emotionally, including facing their own mortality, without a sense of when they may resume the normality of their former lives.

Conclusions: Ambiguity and uncertainty characterise the experiences of those with haematological malignancy. Whilst participants have access to specialist teams, there are opportunities for health and social care professionals to provide more support for individuals to come to terms with the critical events they have faced and to prepare them for their return home and to continue former lives and aspirations following prolonged hospitalisation.

1. Introduction

Haematopoietic stem cell transplant is increasingly the treatment of choice for patients with a range of haematological cancers including leukaemia, non-Hodgkin lymphoma, Hodgkin lymphoma and myeloma (Rizzo et al 2006). Globally, 10 000 patients are treated annually for haematological illness (Gratwohl et al 2008). For those with malignant disease, treatment with stem cell transplant (SCT) follows intensive courses of chemotherapy and radiotherapy including total body irradiation in some cases. Significant morbidity and mortality are associated with the underlying illness and treatment including transplantation. Physical and psychosocial problems are known to continue well into the post-transplant recovery phase (Andrykowski et al 2005, Lee et al 2001). In addition to complex physical and bodily changes, there are psychosocial and emotional issues to be faced (Cooke et al 2009, Sherman et al 2005, Hacker & Ferrans 2003, Hacker et al 2002, Hendricks & Schouten 2002, Fife et al 2000). This paper reports the findings from an interpretive phenomenological study which explored the lived experience of 15 people treated with allogeneic stem cell transplant (SCT) for haematological malignancy.

1.1 Background

Considerable attention has been dedicated to the assessment of quality of life (QoL) for patients undergoing SCT. In a review of QoL literature following SCT between2002-2007, it was found that although physical, psychological and social aspects of QoL improved over time, survivors of SCT experience persistent anxiety and depressive symptoms, fatigue, sexual dysfunction and fertility concerns (Mosher at al 2009). Of thirty seven studies reviewed by Pidala et al (2009) examining QoL after SCT greater impairments to QoL were found in those undergoing allogeneic SCT compared with autologous SCT. However acute and chronic GVHD were found to pose threats to QoL in those receiving allogeneic SCT (Pidala et al 2009), corroborating Lee et al’s (2006) findings that those with chronic GVHD had worst QoL in those six months post transplantation.

Over recent years studies of patient experience have begun to highlight the challenges faced (Stephens 2005, Jones and Chapman 2000, Cohen and Ley 2000), not least to try to make sense of the traumatic events both leading up to diagnosis and during treatment with SCT. In a study exploring the lived experience of 20 adults undergoing autologous SCT patients report being physically and emotionally unprepared for what they had to face (Cohen and Ley 2000). In a study of 7 people receiving autologous SCT patients report dramatic changes in their appearance as well as severe weakness and report a determination to stay alive despite feeling near to death (Stephens 2005).Adult survivors of autologous bone marrow transplantation report how the fear they experiencedduring treatment was balanced with hope for survival (Cohen & Ley 2000). The psychological cost of SCT is reported in patient narratives and is linked to the invasiveness of the treatment with some participants expressing that you never recover completely from the transplant leaving an undetermined period of recovery (Stephens 2005).

As survival rates continue to improve researchers have begun to consider the wider context of the psychosocial and emotional impact of treatment and recovery for those with haematological malignancy receiving SCT. In this paper the theme of the Immediacy of Illness and Existential Crisis resulting from a diagnosis of haematological malignancy and treatment with allogeneic SCT is reported.

1. Aim

The aim of this study was to explore thelived experience of patients undergoing allogeneic SCT forhaematological malignancy.

2.1 Design

The study followed an interpretive phenomenological methodology (Smith et al 2009) to gain insights into participants lived experience leading up to and following allogeneic SCT. Smith et al (2009) advocate a homogenous sample so that convergence and divergence of experiences can be examined in some detail. The participants in this study formed a homogenous sample by virtue of their treatment with allogeneic SCT whilst their experiences, personal characteristics and contexts were unique.

2.2 Setting and sample

A purposive sample of 15 participants aged between 22 and 68 years were recruited from two specialist treatment centres in the UK.The researcher was invited to join the multidisciplinary meetings in the out-patient departments where patients attended their follow up appointments post SCT. Clinical teams identified patients who met the inclusion and exclusion criteria for the study (Table 1). Patients were approached by the researcher, who explained the purpose of the study and provided a participant information sheet.Arrangements were made to contact potential participants over the following few days to elicit their willingness to take part in the study. Nine men and six women agreed to participate in the study (Table 2).

2.3 Ethical considerations

A favourable opinion was granted by a Committee of the National Research Ethics Service and the Faculty of Health and Medical Sciences Ethics Committee at the University of Surrey. Permission to conduct the research was granted by the Research and Development Departments at the two study sites. A significant ethical issue concerned the possibility of causing distress to a vulnerable group of people. The most important strategy put in place was preparedness to discontinue the interview in such circumstances. The participants’ specialist teams and general practitioners were informed about the study and the participant information sheet stated that the researcher could make referrals for professional support should this be required.The researcher was not involved in providing clinical care for the participants. Voluntary written consent was obtained from participants before data collection.

Table 1Inclusion and exclusion criteria

Inclusion Criteria

• Male or female who have undergone allogenic stem cell transplant between 3-6months previously
• Aged 18 years and over
• Able to understand English and participate in an interview in English or with a translator available
• Participants whose hospital team and general practitioner have been informed of their participation in the study

Exclusion criteria

• Unable to give written informed consent and lacking capacity to do so
• Too weak or unwell to participate in the study
• Having had an allogeneic stem cell transplant over 12 months ago

Table 2: Participant details

Participant / Age / Gender / Diagnosis / Donor / Graft versus host disease
1 / 22 / Male / Hodgkin
Lymphoma / Unrelated donor
/ Gut GVHD now resolved
2 / 67 / Female / Acute Myeloid Leukaemia / Unrelated donor / No GVHD
3 / 29 / Female / Acute Myeloid Leukaemia / Unrelated donor
/ Skin GVHD now resolved
4 / 59 / Female / Acute Lymphobastic
Leukaaemia / Sibling donor
/ Chronic GVHD gut and liver
5 / 24 / Female / Aplastic Anaemia / Sibling donor / No GVHD
6 / 63 / Male / Acute Myeloid Leukaemia / Son donor / GVHD
7 / 68 / Male / Acute Myeloid Leukaemia / Cord x 2 / Skin GVHD
8 / 63 / Female / AML (from CML) / Unrelated donor / GVHD
9 / 68 / Female / AML (from MDS) / Unrelated donor / No GVHD
10 / 62 / Male / Myelofibrosis / Unrelated donor / GVHD
11 / 50 / Male / Myelodysplastic
syndrome / Unrelated donor / GVHD
12 /
38 / Male / Lymphoma
peripheral T cell / Sibling donor / No GVHD
14 / 67 / Male / Myelofibrosis / Unrelated donor / GVHD
15 / 33 / Male / Lymphobastic
Leukemia / Unrelated donor / No GVHD
16 / 62 / Male / Acute Myeloid Leukaemia / Unrelated donor / No GVHD

collection

2.4 Data Collection

Participants were interviewed on one occasion in their homes or at the treatment centre between April and September 2013. Since the essence of phenomenological enquiry is to understand the experience through participant accounts (Smith and Osborne 2007) the interview was non directive other than the opening question ‘’Can you tell me about your experience of being treated with allogeneic SCT and what has it been like returning home?’’ This opening question was supported by probes and affirmations of understanding (Kvale1996). The narrative style of interview enabled the participants to tell their story and to talk about experiences which were important to them in relation to the overall purpose of the study.Four participants asked for their husband or wife to be present. One participant attended with her mother. Permission to include family members’ contributions to the interview was gained.

2.5 Data analysis

Interviews were recorded and transcribed by the primary researcher. Thematic analysis of the interview transcriptions was conducted using the procedural steps outlined by Colaizzi (1978) and Smith et al (2009) as a guide. This process ensured a standard approach was taken with each interview transcript including reading and re reading the transcript and line by line coding. Common themes were subsequently identified and any exceptions across the data sets highlighted. Interpretive phenomenological methodology recognises and accepts that a researcher’s previous knowledge and experience are included as part of the analysis (Colaizzi 1978, Crist & Tanner 2003, Smith et al 2009).

2.6 Trustworthiness

The researcher is a nurse, experienced in eliciting patient’s stories and a pilot interview served as valuable practice in narrative interview technique. The first author of this paper conducted the primary data analysis and the second two authors provided commentary on raw data and the emergent themes. This process in addition to reading relevant literature and maintaining a research log and field notes contributed to the overall trustworthiness of the study (Lincoln and Guba 1986).

3. Findings

One of the overarching themes that emerged from the data was: The Immediacy of Illness and Existential Crisis. The sudden or insidious onset of haematological cancer throws participants’ lives into an existential crisis in both an immediate and enduring sense. Participants described the immense challenges they faced includinga fight for survival through intensive conditioning chemotherapy and radiotherapy, with stem cell transplantation the only remaining option available to treat aggressive or relapsing disease. The immediacy of illness resulted in an existential crisis for participants, which included critical events resulting in high levels of uncertainty.

3.1 Critical events

Participants’ illness experience is characterised by a series of critical events. In some cases, participants and their loved ones described being very near to death at diagnosis whereas for others disease onset was more insidious. All were cared for in protective isolation due to impaired immunity caused by their disease and treatment with conditioning chemotherapy. Participants highlighted how physically and emotionally challenging this experience was, coupled with the possibility of stem cell rejection. Systemic infections and in some cases reaction to trial chemotherapeutic agents posed life threatening risks.

The life and death nature of the illness is described by a patient’s wife:

‘’they actually told my husband when he was brought into the hospital he had a fortnight, it was that close. I mean we just about got him out of the car into the hospital before he collapsed, it was that bad.’’ (P16W)

In this data extract the patient’s wife is describing how close to death her husband was before he was admitted to hospital where he was confirmed to have acute myeloid leukaemia. She goes on to describe:

‘’It was like being thrown into a cement mixer and wondering what was going to come out at the other end (it was just a haze really, yea, so much going on P16).’’ (P16W)

The ‘cement mixer’ analogy portrays a sense of the complete disruption that was occurring with little conception of what was going to happen at the other end of treatment. The immediacy of the lifeand death situation and the complete uncertainty was an overwhelming experience for this couple.

Describing treatment experiences of induction chemotherapy and radiotherapy leading up to SCT, participants liken the time spent in a protective isolation facility as feeling like a ‘caged animal’ (P15) or ‘serving a prison sentence’ (P11 and P15). Participant 15 found these times particularly frustrating, ‘when you’re feeling mentally ok, it just drags’ and kept a calendar to cross out the days until he was able to come out of isolation. The temporal aspects to which this gentleman refers accord with the ‘treatment calendar’ as portrayed by Schou and Hewison (1999 p49) over which he has little control and which conflicts with his personal and life calendar enforcing a sudden disruption to his day to day existence and life plans.

A number of the participants describe the conditioning phase of the transplant experience as being particularly distressing with the inherent risk to survival. Participant 9, a sixty eight year old lady, eleven months post SCT for acute myeloid leukaemia recalls:

‘’And I landed up with one platelet! God knows how I survived. They’re now a hundred and sixty-six, woopeee! Put the flags out! I mean ok, I laugh about it but it was... I’m going to say this, you probably won’t put it in but I was knocking on death’s door...the professor said to me it’s going to be like nothing you’ve had before. I know you’ve had three lots of chemo, and in different stages it’s got stronger and stronger, but this one is the ultimate. He said you can never have any more. He said if this comes back I’m afraid it’s curtains.’’ (P9)

Whilst this lady appears to speak fairly light-heartedly about her experience, it was one which carried very real and potentially life threatening consequences illustrated by her reference to ‘knocking on death’s door’. Furthermore, the professor’s sobering advice thatif the ‘ultimate’ treatment failed it would be’ curtains’. The fact that she feels able to laugh about it now suggests her relief to have survived or perhaps the use of humour was a deliberate strategy to underplay the seriousness of the situation. It is also sobering that for this lady this would be her final treatment sincefurther chemotherapy was not an option. Her survival is therefore dependent on the success of her SCT.

Participant 11’s powerful description of his experience of conditioning therapy and SCT is articulated in the following data extract:

‘’you’ve had the core of your body killed and brought back to life again and you can’t just shrug that off and bounce back.’’ (P11)

This gentleman’s description of ‘the core of your body being killed’ and being ‘brought back to life again’ is a powerful description of the life and death situation that participants find themselves in. Several participants associated conditioning chemotherapy with the beginning of death. This temporary state of ‘death’ ceased when the stem cells were infused and there was evidence of successful engraftment. Though not specifically referring to any one part of the SCT process participant 1 in the current study affirmed’you’ve had a huge bang to your body’ and ‘you’ve been stripped down from your whole’. This participant uses a mechanistic metaphor to describe the SCT conditioning process as one where you are taken apart like a machine and stripped down to your core. The violation to the body described here is also evident in another study by Potrata et al (2010).

Despite relatively mild physical effects during the initial two cycles of chemotherapy, which he described as 'being in limbo' participant 6 acknowledges the rapid deterioration of his physical condition during the time of his pre-transplant conditioning. He questions whether his vegetative state was due to tiredness relating to both the treatment and the fact that he suffered heart failure caused by the chemotherapy or if this was a psychological reaction to his circumstances. He appeared to feel more comfortable with the former explanation. His experience of awaiting the higher intensity chemotherapy, characterised by his use of the metaphor 'being in limbo' is evocative of the concept of liminality identified by Turner (1969).This so called liminal state has been associated with experiences of cancer patients in a number of studies (Little et al 1998, McKenzie 2004, Thompson 2007, Cayless 2010). Turner (1969 p97) uses the concept of liminality to explain the process of transition between roles and positions in society where the liminal phase is viewed as particularly ambiguous 'betwixt and between structural classification'. In the context of illness, Molzahn et al (2008 p15) suggest that 'liminality refers to the ambiguous experience of one's life story being interrupted by illness'. For participants in the current study it appears that a number of liminal phases are experienced throughout the illness journey between critical events and periods of relative stability.