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International Journal of Palliative Nursing 2013, Vol 19, No 4 171

Abstract Aim: To explore patients’ views on living with anaemia and undergoing blood transfusions in a day hospice. Methods: This was a qualitative study using semi-structured interviews. Ten patients who between them had received 90 transfusions were purposively sampled from the hospice day unit. The interviews were digitially recorded, transcribed anonymously, and the transcripts analysed using a phenomenological analysis framework. Findings: Tiredness was the most common symptom of anaemia. Participants liked attending the day hospice instead of hospital for their transfusions owing to differences in transport, parking, waiting time, and space to ask questions. The majority had no concerns about hospice transfusion and would be happy to return for further treatment. Conclusions: Haematology patients can have a good experience when undergoing blood transfusion at a day hospice. Hospices should perhaps offer this procedure more widely. Key words: Anaemia l Blood transfusion l Hospice l Qualitative research l Neoplasm

A naemia is a deficiency in the number, size, or oxygen-carrying capacity of red blood cells. Its well-recognised association with

cancer and cancer therapy is an important clinical factor in the treatment of malignant diseases, and it globally reduces quality of life (Tonia et al, 2012). If a haematinic deficiency is identified, treating this will usually be the first priority. However, blood transfusion is often a mainstay of supportive therapy for many cancers (McClelland, 2007), and it can be associated with significant improvement in quality of life (Sciortino et al, 1993; Gleeson and Spencer, 1995). Many terminally ill patients need repeated transfusions over several months. Sometimes this requires emergency admission, but more often it takes place in haematology/oncology outpatient departments or day units (Boyce et al, 2003).

Hospices offer another option (Johnson et al, 1990), and their emphasis on control of other symptoms and psychosocial and spiritual issues might benefit patients. However, there can be significant fear and stigma related to referral for hospice or palliative care (Ronaldson and Devery, 2001; Perkins et al, 2007).

In 2011 the haematology day unit local to the authors was to move from one hospital to another. Through negotiation with the local acute trust, working closely with their haematology team, the local hospice developed protocols and a service-level agreement for a pilot whereby hae- matology patients could have blood transfusions at the day hospice during this transition period.

Studies have investigated the experiences of terminally ill patients who have been transfused (Sciortino et al, 1993; Gleeson and Spencer, 1995) and have found measurable, significant, and persisting subjective improvement in symp- toms and quality of life. A satisfaction survey was also conducted among the patients receiving transfusions at the day hospice during this local pilot (Elyan et al, 2012). However, to the authors’ knowledge no in-depth interview studies have explored patients’ experiences of receiving

transfusions within a day hospice. The authors hoped to obtain valuable insights into such experiences that might inspire other care providers to consider providing more transfusions in day hospices and potentially provide directions for further research.

Aim To explore patients’ views on living with anaemia and undergoing blood transfusions in a hospice.

Methods A qualitative methodology guided by principles of phenomenology, which investigates conscious- ness as experienced by the subject (Baker et al, 1992), was used to investigate patients’ experi- ences and perspectives of living with anaemia and undergoing transfusion in a day hospice.

Setting The study was undertaken in an independent hospice in the South of England. In the UK a

Research

The experiences of patients undergoing blood transfusion

in a day hospice Jacquie Orme, Duncan Still, Rebecca Day, Joanne Evans, Paul Perkins

Jacquie Orme and Duncan Still are GP Specialist Trainees, Great Western Hospitals NHS Foundation Trust, Swindon, England; Rebecca Day and Joanne Evans are Research Nurses, Sue Ryder Leckhampton Court Hospice, Cheltenham, England; Paul Perkins is Consultant in Palliative Medicine, Sue Ryder Leckhampton Court Hospice, Church Road, Leckhampton, Cheltenham, GL53 0QJ, and Gloucestershire Hospitals NHS Foundation Trust, Cheltenham

Correspondence to: Paul Perkins paul.perkins@ suerydercare.org

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hospice is an institution where a multidisciplinary team provides holistic care for patients with life- threatening illnesses and their families. This hospice has in-patient, day care, and hospice-at- home components. It provides the only specialist palliative care in-patient beds within its county and is the only one offering medical day care procedures (e.g. blood transfusions, drug infu- sions, ascitic and pleural drainage). The county is a mixture of urban and rural areas and is not very ethnically diverse, with over 95% of the

population classifying themselves as white according to the 2011 census (Office for National Statistics, 2012). Deprivation varies across the county, with areas within the 20% most and 20% least deprived in England (South West Observatory Core Unit, 2011).

Participants A purposive sample of adult patients was recruited from the hospice day unit. These were patients with capacity who were under the care of the haematology team at the local cancer centre and who had received at least one transfusion at both hospital and hospice. Patients were excluded if they were unable to understand sufficient English to take part in the semi-structured interviews.

Ethical considerations The investigators were aware of the vulnerability of potential participants. Ethical approval was granted by South West NHS Research Ethics Committee (11/SW/0270). Governance approvals were granted by Gloucestershire Hospitals NHS Foundation Trust and the Sue Ryder Research Governance Group.

Data collection Hospice Advanced Nurse Practitioners discussed the study with patients before or after transfu- sion in the day hospice. Interested patients were given an information leaflet and asked whether they were happy for their contact details to be passed on to the interviewer (JO). JO telephoned willing patients after a minimum 48 hours ‘cooling off period’ to book a time and place for the interview. Written consent was obtained prior to starting the interview. There was sufficient funding and resources to conduct ten in-depth interviews.

The demographics, diagnosis, and Eastern C o o p e r a t i v e O n c o l o g y G r o u p ( E C O G ) Performance Status (Oken et al, 1982) of all participants were recorded at the start of the interview. Conversational style, digitally recorded interviews (Denzin and Lincoln, 2003) were con- ducted in a quiet area of the hospice or the patient’s home using a semi-structured interview guide (Box 1).

Questions focussed on experiences of receiving transfusions in the day hospice and quality of life issues arising from that experience. It was important to use discretion and respond to the condition of the patient by being flexible with time, considerate of their ability to talk, and sensitive to their needs to continue talking as long as they wished to engage. If a patient had

Box 1. Semi-structured interview guide

My background is medicine but I am currently conducting this research. I am not employed by the hospice or local hospital.

l Tell me about your illness

l I understand you have anaemia—how has this affected you?

l How are you coping with/managing the anaemia?

l How is your anaemia being treated?

l Have you been given iron supplements/tablets?

l Have you ever needed to go into hospital for a transfusion?

l How many times have you had a transfusion as an emergency?

l How many times have you had a transfusion as a planned procedure?

l How many units did they give you on these occasions?

l How does having a transfusion make you feel?

l How was the decision made to have a transfusion? Why did you have one?

l How was the decision made as to where you had the transfusion?

l Who makes the decisions about your treatment?

l Are there any differences between receiving a transfusion in the hospice compared to the hospital? If yes, how?

l What are the things that would make you recommend one over the other?

l Another thing we’re interested in is how people feel about coming to a hospice. Was your transfusion at the hospice your first visit to a hospice?

l Before coming to the hospice, what did you feel about having your transfusion there?

l Now that you have been to the hospice, what are your thoughts about it? What if someone in the future suggested you come back for some other treatment or to stay—how would you feel about that?

l Have your thoughts about this changed because of your experiences having a transfusion/transfusions?

l Tell me how you have been since the transfusion? Do you feel differently?

l Are there good sides and down sides to having it done? How effective was it for you?

l What would you have liked to have known prior to the transfusion?

l Is there anything else you’d like to tell us?

l At the moment we do not have good research evidence to suggest which is better for patients—transfusion in a hospice or transfusion in a hospital. If you were approached to take part in a study to test which one of these settings was better for patients, what would be your thoughts about that?

l Would you or your family like to receive a copy of the findings from this study?

Thank you

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become distressed during the interview they would have been asked if they would have liked the interview to be stopped or postponed and their permission would have been sought to pass notification on to their keyworker and/or family so that they could have received more support.

Transcribing and analysis The interviews were transcribed anonymously by hospice volunteers and a research nurse. JO conducted the analysis manually using a recog- nised phenomenological analysis framework (Reinharz, 1983; Norlyk and Harder, 2010), making links and connections between data in order to generate categories. Datasets from all participants were compared to identify unique and common experiences. A composite summary of categories and then themes completed the analysis process.

The intention to use the principles of phenomenology (Van Manen, 1990) guided the conduct of the research in the following ways:

● Participants had the freedom to illuminate their personal experience without judgement or prejudice on the part of researchers ● JO used her professional knowledge and experience to make sense of participants’ stories ● The researchers acknowledged that they contributed to making data through aligning their own experiences alongside those of participants during interviewing ● Although an interview topic guide was used, generally the agenda remained that of the participants ● The researchers acknowledged that context is as important as the story itself and is unique to each individual.

Findings Ten individuals were asked to participate and all ten agreed. Two major themes emerged from the analysis: quality of life, and receiving transfusions at the day hospice.

Sample characteristics The participants were seven males and three females. Their ages ranged from 67 to 95 years, with a mean of 79.5 years. Seven of the participants had a diagnosis of myelodysplasia, with the remaining three having diagnoses of non-Hodgkin’s lymphoma, myelofibrosis, and sideroplastic anaemia. All had received multiple transfusions (range 4–13). They were receiving regular transfusions every 2 to 4 weeks and were receiving 2 to 3 units per transfusion (Table 1).

Quality of life The participants spoke of the symptoms they experienced from anaemia and how these responded to transfusion.

Symptoms of anaemia The participants presented with a wide variety of symptoms ranging from fatigue to shortness of breath and dizziness, with fatigue most prevalent.

‘It just gets sort of tiring.’ (Participant (P) 1)

‘Well, I’m certainly tired and [it’s] easy to fall asleep.’ (P7)

Some had no symptoms from their anaemia:

Interviewer: ‘Does it affect your life quite a lot?’

‘No, not really.’ (P2)

Participant

Number of transfusions Number of

units per

transfusion

Frequency of

transfusion

ECOG

performance

status*

Time from

interview

until deathHospital Hospice

1 8 2 2 4 weeks 1

2 3 9 3 2 weeks 1 3 months

3 6 3 2 3 weeks 2

4 5 7 2 or 3 4 weeks 1

5 2 2 2 4 weeks 0

6 5 8 3 3 weeks 1

7 6 4 3 2 weeks 2 2 months

8 3 7 2 4 weeks 2 4 months

9 5 5 2 4 weeks 1

10 2 3 2 3 weeks 2

*ECOG, Eastern Cooperative Oncology Group (Oken et al, 1982)

Table 1. Participant data

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Response of symptoms to transfusion The responses to transfusion varied, with some perceiving great benefit while others did not.

‘Well I suppose it does help, in the context of improving symptoms, I suppose it does but not, I’m not over aware about it.’ (P7)

‘... you know I feel better after, sometimes the next day I feel very lively.’ (P8)

Receiving transfusions at the day hospice Some liked having a transfusion at the hospice:

‘I think the hospice is more err, how can I put this, user friendly.’ (P5)

‘I couldn’t believe how well you were looked after here, I mean it’s, it’s not the same. I mean you really enjoy coming here.’ (P1)

Waiting time The hospital was described as busy and under- staffed. The participants thought the nursing staff were very busy dealing with chemotherapy patients, who took priority.

‘So that’s an hour gone before you could get anything done. Then you go, you get in there and then your time, I’ve been shut in a room like this on your own because there’s no other seats available because of the chemo. And of course, I mean, unfortunately they gotta, the nurse has got to see to the chemo first.’ (P1)

‘Well, there’s less hanging about [in hospice], I think that’s the tiring thing about going to hospital.’ (P10)

Transport The majority of participants required transport, a n d t h i s w a s p r o v i d e d b y t h e h o s p i c e (volunteer drivers) or hospital (ambulance). In the hospital, participants felt they were waiting around for transport.

‘I was quite exhausted by the end of the day’. (P10)

‘... you know even … even if I have transport to the hospital … it depends on just how busy they are, how long I have to wait.’ (P9)

Parking was easier at the hospice for those who could drive themselves:

‘The parking is wonderful.’ (P4)

‘And of course, as far as I’m concerned I can drive here and I’ve got somewhere to park. I don’t have to drag my wife away from her golfing.’ (P8)

Time to talk The majority of participants felt that there was more time for them at the hospice. They thought that the staff at the hospital were very caring but that the hospice nurses had more time.

‘Well it’s calmer in the atmosphere.’ (P3)

‘You [at the hospice] answer a lot more problems … [The staff at the hospital were] rushed off their feet ...’ (P4)

Views of the hospice Some participants knew about the hospice from previous experiences:

‘Well I knew from my wife, my wife died of cancer 3 years ago.’ (P5)

‘Well my daughter was in here in um, February/ March for 6 weeks and passed over. So uh, it’s been, it’s been, well it’s been a pleasure coming here but also I had some idea of what it would be like to come here.’ (P7)

‘... having been clergy … we are used to that sort of thing.’ (P9)

One patient had no preference for where he received his blood:

‘Yeah, happy going anywhere ... it is all the same blood.’ (P6)

A minority had some concerns over attending the hospice for transfusions but these were resolved after their first visit.

‘I wasn’t quite sure what the … what [the hospice] was used for now, and I asked them then.’ (P10)

‘Well, I wondered, I’ll admit, I did wonder but er, you know after the first day no problem.’ (P2)

Discussion Interpretive phenomenology is a popular choice of approach for research in which both unique experiences and commonalities between experi- ences are valued, and it has been found to contribute to empirical, moral, aesthetic, personal,

❛There seemed to be benefits compared with treatment at the hospital, with issues around waiting, transport, and time to talk being discussed.❜

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and socio-political knowledge development (Van der Zalm and Bergum, 2000). It is an appropriate methodology to access the life world of those with cancer (Potter, 2004; Mitchell, 2007), people receiving palliative care (Hopkinson and Hallett, 2001; van der Molen, 2005), and their carers (Penner and McClement, 2008; Penman et al, 2009). The approach emphasises the need for researchers to be ‘reflexive’ during research proc- esses (Finlay, 2002), which involves reflection on action and interpreting what has been said both in a single interview and in interviews with different participants. It often uses smaller sample sizes than other approaches such as grounded theory, which might be considered a limitation (Pringle et al, 2011). It has been argued that the effective- ness of an interpretative phenomenological article should be judged by the insight it gives to a broader context and that the account needs to be rich and transparent enough for the reader to assess transferability (Smith et al, 2009).

To the authors’ knowledge, this is the first time that in-depth qualitative interviews have focussed on blood transfusions in a day hospice. Although some research has examined symptom burden, this study adds depth to the understanding of how these patients feel. Some described fatigue while others remained relatively asymptomatic. Patients also varied in their response to transfusion.

The day hospice staff had been concerned that fears about hospice would cause anxiety, as patients can be fearful of referral to palliative care (Ronaldson and Devery, 2001) and hospice (Perkins et al, 2007). However, some of the participants knew about the hospice because of previous experiences, others said that they were not concerned, and some were afraid but were reassured once they had attended. In the patient satisfaction survey (Elyan et al, 2012), a fifth of respondents admitted to concerns about coming to a day hospice for blood transfusions, but for many their perceptions changed after attendance. There seemed to be benefits compared with treat- ment at the hospital, with issues around waiting, transport, and time to talk being discussed.

The participants were not patients who would ordinarily have been referred to the hospice, as haematology patients requiring repeated transfu- sions are not often managed in hospices. Indeed, it might be that patients with haematological malignancies are referred to specialist palliative care less often than those with other cancers (Howell et al, 2011). This may be because this group of patients is very linked in to care with haematologists or because they are not thought to require palliative care, although they do fit the World Health Organization (2013) definition of

having life-threatening disease and were generally symptomatic (the asymptomatic patients would undoubtedly have developed symptoms if they were not transfused). There may be concern around costs of transfusion or the ability to sup- port complications of transfusion in a hospice. Such reactions are uncommon—there were 10 reactions reported and 0.4 deaths per 100 000 components issued between 1996 and 2004 (McClelland, 2007). However, not all hospices may have the equipment needed to provide a safe and efficient service, e.g. a blood refrigerator and resuscitation equipment.

The group of patients who were afraid of coming to a hospice but, after attendance, then felt reassured is an important one. It would be interesting to conduct a larger study and examine whether day case hospice attendance for transfu- sion has subtle effects on patient journeys. It might be that patients have more time to talk or think about quality of life and burdens/benefits of treatment the earlier they attend a hospice. Furthermore, interactions with specialist pallia- tive care might make these patients more likely to accept input from these services in the future. Resource use and/or place of death might be influenced. A previous retrospective analysis of referrals to specialist palliative care from a hospital haematology day unit found that referral to specialist palliative care may alter patient journeys (Boyce et al, 2003).

In addition to blood transfusions, simple procedures such as intravenous infusions, para- centesis, and pleural aspirations can be carried out in day hospices. Providing treatments for patients when they are relatively well means that some of the fear of hospice might be lessened and they might be more willing to return when they have more complex needs (Day et al, in press).

Limitations As with all qualitative research the sample size was small and thus it is not possible to extrapo- late far from the findings. The study was conducted with patients who attended one hospice and two hospital units. These patients were experts on anaemia and its management as they had experienced many blood transfusions between them. The interviews were conducted by a doctor, which may have influenced some of what the participants said—e.g. there was little criticism of doctors. Some have argued that the medical skills of history taking have placed prac- titioners in an ideal place to conduct qualitative research (Helman, 1991; Whittaker, 1996), whereas Britten (1995) highlighted that a semi- structured interview is very different from a

❛Providing treatments for patients when they are relatively well means that some of the fear of hospice might be lessened ...❜

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medical consultation. Some of the interviews were conducted in the hospice, although they took place in a private area away from other staff and JO had no day-to-day input into the care of these patients. It is hoped that this meant the participants felt able to speak freely.

Future research and recommendations A larger prospective study is needed to elucidate whether the disease journey for haematology patients would be altered if they were to have more contact with hospices through repeated blood transfusions. It would be interesting to explore whether patients who visit a hospice for transfusions would be more likely to accept other forms of specialist palliative care or more likely to die outside hospitals. Such a study should involve a measure of resource use. There is a need to know whether blood transfusions in hospices are cost-effective as well as acceptable to patients.

Conclusions The study gives some insight into patients’ views of transfusions in a day hospice. This is a proce- dure that can be done well in day hospices and it can be a good experience for patients.

Acknowledgments We are grateful to the study participants. This work was supported by the 3 Counties Cancer Research Network Charitable Fund.

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❛There is a need to know whether blood transfusions in hospices are cost-effective as well as acceptable to patients.❜

●IJPN

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