N U R SI N G P R A C T I C E I S S U E S

The spiritual needs of neuro-oncology patients from patients perspective

Aline Nixon and Aru Narayanasamy

Aims. This study aimed to identify the spiritual needs of neuro-oncology patients from a patient perspective and how nurses currently support patients with spiritual needs. Background. Spiritual needs of cancer patients should be assessed and discussed by healthcare professionals from diagnosis. Nurses should assess and support neuro-oncology patients with their spiritual needs during their hospital stay. Design. Qualitative research. Methods. Data were collected through a Critical Incident Technique questionnaire from neuro-oncology patients and were subjected to thematic content analysis. Results. Some patients with brain tumours do report spiritual needs during their hospital stay and some of these needs are not met by nurses. Conclusions. There is clearly a need for healthcare professionals to provide spiritual care for neuro-oncology patients and their relatives. Further research is required to explore how effective nurses are at delivering spiritual care and if nurses are the most appropriate professionals to support neuro-oncology patients with spiritual care. Relevance to clinical practice. The study illuminates that some neuro-oncology patients have spiritual needs that could be met by nurses. Spiritual needs include supportive family relationships, emotional support, loneliness, religious needs, need to talk, reassurance, anxiety, solitude, denial, plans for the future, thoughts about meaning of life, end of life decisions and discussion of beliefs. The implications of the ndings of this study are that nurses need to be aware and respond to these spiritual needs. Key words: family support, neuro-oncology, spiritual care, spiritual needs, spirituality
Accepted for publication: 7 August 2009

Introduction
The drive for promoting spiritual care comes from various statutory bodies and agencies (QAAHE 2001, DOH 2003, NICE 2004, NMC 2004, 2008). National clinical guidelines in the UK recommend that the spiritual needs of cancer
Authors: Aline Nixon, BSc, PGDip, MSc, RGN, Research Nurse, School of Biomedical Sciences, Queens Medical Centre, University of Nottingham; Aru Narayanasamy, BA, MSc, PhD, RGN, RMN, Cert Ed, FHEA, National Teaching Fellow, Associate Professor, Director, Ethnicity, Diversity and Spirituality (EDS) Hub, Faculty of Medicine & Health Sciences, School of Nursing, Midwifery and Physiotherapy, Queens Medical Centre, University of Nottingham, Nottingham, UK

patients are assessed and discussed by healthcare professionals at key points starting at the point of diagnosis (NICE 2004). Spiritual needs and spirituality being concerned with the spirit aspect of the human condition. (QAAHE 2001). The importance of the provision of spiritual support for cancer patients has also been highlighted internationally
Correspondence: Dr Aru Narayanasamy, Associate Professor, Director, Ethnicity, Diversity and Spirituality (EDS) Hub, Faculty of Medicine & Health Sciences, School of Nursing, Midwifery and Physiotherapy, A Floor, Queens Medical Centre, University of Nottingham, Nottingham, UK. Telephone: +44(01) 155 8230808. E-mail: Aru.Narayanasamy@nottingham.ac.uk

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by the World Health Organisation (WHO 1990). The WHO (1990) identies spiritual support as an essential component of palliative care for cancer patients. The National Comprehensive Cancer Network (NCCN), an alliance of 20 leading cancer centres in the USA identify spiritual concerns as a symptom of distress in cancer patients and recommends that these should be assessed and managed by healthcare professionals. Despite these guidelines, there is room for improvement in the spiritual healthcare that is currently provided in the UK (South Yorkshire Workforce and Development Committee (SYWDC) (2003a,b). Spirituality comes into focus when an individual faces emotional stress, physical illness or death. Narayanasamy (2007) and Laukhuf and Werner (1998) report that being spiritual decreases fear of death, increases comfort and supports a positive perspective of death in ill patients. Oncology patients are likely to reect on spiritual and existential issues because of the uncertainty of their future (Lundmark 2006). For patients with brain cancer, spiritual and existential issues may be of even more concern because they face potential death and a threat to their individual personality and a potential loss of self because of the functional and cognitive decits that accompany this disease (Fox & Lantz 1998, Adelbratt & Strang 2000, Strang & Strang 2001). A brain tumour literally inltrates the organ that has been shown to be the biological basis for spiritual experience (Borg et al. 2003). Spirituality is considered to be a human phenomenon present in all individuals, and it is the essence of our being (Narayanasamy 2007, Swinton 2001, DOH 2003, SEHD 2002). It is a quality that enables us to nd meaning and purpose in our lives (Narayanasamy 2007). The concept of spirituality is broader than religion and applies to all persons of both religious and non-religious orientation (Ross 1997, Narayanasamy 2007). Without a strong evidence base of what neuro-oncology patients spiritual needs are, it is impossible to put policies and guidelines into practice and patients may receive suboptimal spiritual healthcare. It is important for neuro-oncology patients in particular to explore how nurses in the neurosurgical setting identify and manage the spiritual needs of patients as this is where most neuro-oncology patients receive initial treatment and diagnosis in the UK. The purpose of this study is to establish the spiritual needs of neuro-oncology patients from their perspective.

Background
While there is growing research interest into the spiritual needs of patients with cancer in general (Mao & Yang
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1994, Hermann 2001, Albaugh 2003, Taylor 2003a,b, 2006, Murray et al. 2004, Taylor & Mamier 2005, Lundmark 2006), a review of the literature identied very few studies that have investigated the spiritual needs of neurooncology patients. It is likely that neuro-oncology patients have unique spiritual needs compared to other patients with cancer as they are not only facing a threat to their life but also to their personality and a potential loss of self (Fox & Lantz 1998, Adelbratt & Strang 2000, Strang & Strang 2001). In Cohen et al.s (2000) study, one cancer patient stated I trust my mind, I dont trust my body. Patients with cancer are at risk of losing trust and condence in their body, but neuro-oncology patients condition is further complicated by the fact that their mind could not be relied on as a result of cognitive decits. It has also been demonstrated that the serotonin system located in the brain may serve as the biological basis for spiritual experiences, so any disease that inltrates the brain directly could potentially alter this system posing a greater threat to an individuals spiritual existence than diseases that target other organs (Borg et al. 2003). Only one group of researchers have really attempted to investigate spirituality in relation to neuro-oncology patients, and this work was limited to small samples in Sweden (Strang & Strang 2001, Strang et al. 2001, 2002). These researchers aimed to identify how neuro-oncology patients and their families cope and create meaning in their situation and whether spirituality is supportive, how nurses dene spiritual needs, if nurses consider spiritual needs to be important for particular groups of patients and the importance and priority that existential support is currently given by nurses. These researchers take the view that spirituality is a broader concept than religion that provides a deep human dimension to all people (Strang et al. 2002). These studies showed that neuro-oncology patients have spiritual needs and that strategies can be used to enable them to cope with these. Strang and Strang (2001) in a study of 20 patients with brain tumour identied several coping strategies that enable patients to cope and apply meaning to their situation. These included information seeking, rationalisation, positive reappraisal of life and redenition, believing in ones own strengths, hope, belief in a cure, humour, distancing, control, bargaining, support from hospital staff, relationships with children, family, friends, work, music, hobbies and faith. The lack of research in this area and the fact that to date the spiritual care of neuro-oncology patients has only been investigated in small samples in Sweden highlights the necessity of research in this area for UK neuro-oncology patients.

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Nursing practice issues

Investigation into the spiritual needs of neuro-oncology patients

Aims
The overall aim of this research was to gain insights into the spiritual needs of neuro-oncology patients and determine their implications for practice.

Methodology
This study based on a qualitative research approach used the critical incident technique (CIT) to enable a deeper understanding of the data and it seemed appropriate for an exploratory study of this nature. The CIT involved collecting and analysing reports of behaviours in dened situations (Kemppainen 2000). CIT was originally used by Flanagan (1954) and has been used frequently in nursing research (Norman et al. 1992, Cox et al. 1993, County 2000, Martin & Mitchell 2001, Narayanasamy & Owens 2001). Flanagan (1954) denes a critical incident as: any observable human activity which is sufciently complete in itself to permit inferences and predictions to be made about the person performing the act. CIT was used in preference to observation because of the practical constraints of using observation in the clinical setting. CIT is also preferable to highly structured interviews/ questionnaires that are too limited for this relatively unexplored area of nursing. An advantage of CIT is that it depends on a description of actual events and is therefore more concerned with what happens in the real world rather than an imagined world of how things should be (Cormack 2000, Martin & Mitchell 2001, Narayanasamy 2004). Analysing specic incidents facilitates recall and helps participants to identify and clarify meanings and feelings that they attach to these situations but may otherwise be unable to articulate (Cox et al. 1993). Data can be collected relatively quickly with CIT as it only requires simple judgements to be provided by participants (Kemppainen 2000). CIT has also been used successfully to collect data about spirituality from nurses (Narayanasamy 2006a) and from patients with cancer (Cox et al. 1993). A questionnaire format provided a convenient tool to collect the data and has been described as a suitable data collection method when using CIT (Kemppainen 2000). A copy of the questionnaire used for data collection as illustrated in Appendix 1 was used to obtain critical incidents related to the following: 1 You feel you had spiritual needs. 2 Were you helped by nursing staff to meet your spiritual needs? If so how? 3 If you werent assisted with your spiritual needs by nursing staff was there opportunity for them to do so?

4 What were the effects on you of the support/lack of support you received from nursing staff regarding your spiritual needs? The questionnaires were distributed to the participants by the researcher in the neuro-oncology clinic once consent had been gained from the neuro-oncology patients and consultant. The participants were all offered a private room to complete the questionnaire alone and given the option to post it back. Many participants requested that the researcher stayed in the room and in some cases this led to the incidents being discussed with the researcher. In some cases, family members of the patients were also present and they assisted the patients in completing the questionnaire. To aid the meaning of spirituality, the following denition was provided for all participants:
Spirituality is the non-physical part of our life which is considered to be the essence of our being. It gives meaning and purpose to our existence. Some associate it with religion, while others do not. Healthcare professionals are responsible for providing holistic care, which requires attention to the body, mind and spirit.

This denition was drawn up by the authors based on the common themes seen in previous papers that have dened spirituality (Narayanasamy 2007, Swinton 2001, DOH 2003, SEHD 2002, Ross 1997). A denition provided a clear focus of the phenomenon being investigated and ensured all participants interpreted the questionnaire from a similar perspective. A disadvantage of providing a denition is that patients are forced into one direction that may not accommodate their personal views of spirituality (Lundmark 2006). However, it was felt that for data analysis purposes and to ensure that participants were all focused on the same phenomenon, the advantages outweighed the disadvantages.

Participants
Data were collected from patients who had a diagnosis of a brain tumour and had previously been hospital inpatients on a neurosurgical unit. Patients were selected in conjunction with a neuro-oncology consultant to exclude patients cognitively or emotionally unable to participate in the study. The consultant reassessed participants emotional and cognitive state on the day of the study and excluded any that were unsuitable. Letters of invitation were sent to 43 patients who were due to attend a neuro-oncology outpatients appointment in one of ve clinics held during a two -month period. These patients were identied at least two weeks in advance from a copy of the outpatients list by the neuro-oncology

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consultant and neuro-oncology nurse specialist. The sample number was determined as the research developed by the amount of suitable patients attending the clinic in the dened period that agreed to participate and the amount of data generated by the sample that the researcher could reasonably expect to analyse in the set time frame. Twenty-three patient participants agreed to participate and questionnaires were completed by 21. Of the 21 participants included in the data analysis, all had been admitted to a neurosurgical unit for a biopsy and/or a craniotomy and debulking of their tumour since the onset of their illness. Nineteen of the patient participants had a diagnosis of a grade III or IV glioma, one had an anaplastic meningioma and the other had a grade II glioma. The patients ages ranged from 1869 years. Patients had been aware of their diagnosis from between threeve months to a year or more. Two of the high grade gliomas had initially presented as a low grade glioma. All patients had also been treated with radiotherapy and/or chemotherapy for their brain tumours at the oncology unit of the local NHS trust.

Ethical considerations
Ethical approval was obtained from the local research ethics committee of the NHS trust where the research data were collected. Research and development department approval was also obtained from the hospital NHS trust prior to commencing the research.

similarities and differences to determine what kind of phenomena they reected. The headings for the meaningful segments were derived from the questionnaires that were organised under the three main headings (Tables 13). Once the meaningful segments from the questionnaires had been categorised under the main headings, the principle investigator then analysed the data to identify themes that emerged from the data. The meaningful segments under each main heading were categorised under several subheadings to represent the emerging themes. These subheadings were modied and revised following discussion with the second investigator. Inter-rater reliability of the categorisation system was measured by a second investigator sorting the meaningful segments under the main headings identied by the principle investigator. The two researchers then discussed emerging themes and discussed and revised the subcategories. The main headings for the patient data were also revised at this stage. Percentage of agreement was calculated between the two researchers for categorising the data for patients under the main headings. Cohens Kappa was then calculated to identify the probability of any agreement between the two investigators being attributed to chance.

Findings
Reliability
The proportion of agreement and disagreement between the coding of the meaningful segments under the main headings by the two investigators was calculated. The percentage of agreement between the two investigators was then calculated using the following equation: Number of agreements 100 Number of agreements + number of disagreements An index of agreement of 71% was calculated.

Data analysis
A classication system was constructed as the incidents were analysed rather than before which has been used successfully in previous research to analyse CIT data (Cormack 1983, Norman et al. 1992, Narayanasamy 2004). A template analysis style was adopted (Crabtree & Miller 1992). The researcher read through 21 CIT questionnaires comprising of substantial data to identify meaningful segments. The segments were classied under the headings spiritual needs, nurse implemented strategies to meet spiritual needs and other effective strategies to meet spiritual needs forming an initial template for analysis. The data were organised manually using conceptual les (Polit & Hungler 1999), which involves developing a le for each identied category. A transcript of all the identied meaningful segments under each heading was typed. For each main category, the meaningful segments were organised into subcategories to reect the themes that were emerging. To form categories, the meaningful segments were compared for
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Neuro-oncology patients spiritual needs

Eleven subcategories of patient spiritual needs were identied. These were reassurance, family support, need to talk, solitude, emotional support, need for connection/loneliness/ depression, plans for the future/sense of normality, no spiritual needs, religious needs and thoughts about meaning of life. These categories with illustrative examples from the questionnaire data are presented in Table 1. In addition, patients also identied several strategies that nurses could

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Nursing practice issues Table 1 Neuro-oncology patient spiritual needs

Investigation into the spiritual needs of neuro-oncology patients

Subcategories of spiritual needs patient reported Family support

Illustrative examples from the patient questionnaire data (1) My main concern was for my family how they would cope without me (2) Was so important for my wife to come daily (3) I needed my family with me (4) Needed someone to share my emotions (5) Post operation I was down as I couldnt think what the correct words were and struggled explaining test phrases. (6) I had no requirement for spiritual assistance (8) I really needed someone to pray with me I think (9) Whole thing has awakened in me stirred in me religious beliefs. Whole reappraisal of life. (10) Thinking about death and having no-one to talk to about it (11) Needed someone to talk to (12) I needed to cry and be allowed to talk about my fears of not seeing my grandchildren ever, of not seeing my sons ever married or settled down. My fear relating to my son who has depression and what might happen to him. My sadness at leaving my husband after 32 years of marriage. I felt I was being hushed when I tried to say these things and that made me more upset. I needed to cry and say them. (29) Asking a lot of questions (13) Reassurance (14) Needed reassurances about survival, to deal with inner panic and disappointment and fears (15) Just needed to accept this on my own (16) A scale of targets to aim for (17) I just wanted to get on with getting it sorted out, not worrying other people too much, and to get back to work and normality (18) I felt scared and thought I was probably going to die. This made me think seriously about my life, what had I done to deserve this? (19) I felt guilty that I had not done enough in my life to prepare for this

Emotional support Need for connection/loneliness/ depression No spiritual needs Religious needs

Need to talk

Reassurance

Solitude Plans for the future/sense of normality

Thoughts about meaning of life

use to support them with their spiritual needs. These strategies were exibility with hospital policies, communication, link to family, providing privacy, religious support, emotional support, company/reassurance, explanations and practical support, sensitivity and providing a positive caring environment. These are illustrated in Table 2. Some patients specically identied that they did not see spiritual support as a nursing role.

therefore emerged from the patient data being other strategies to meet neuro-oncology patients spiritual needs. Under this theme, ve sub headings emerged, which are illustrated in Table 3.

Findings and discussion

Spiritual needs of patients with brain tumours
The data (Tables 1 and 2) indicate that some patients with brain tumours do report spiritual needs during their hospital stay on neurosurgical units and some of these needs are not met by nurses supporting the ndings of previous studies of patients with cancer (Moadel et al. 1999, Strang et al. 2001,
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Other strategies to meet neuro-oncology patients spiritual needs

Some patients found strategies to meet their spiritual needs that did not involve the nursing team. An additional heading

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A Nixon and A Narayanasamy Table 2 Nurse implemented strategies to meet neuro-oncology patients spiritual needs Illustrative examples from the patient questionnaire data (1) They allowed my husband to stop with me on the last night (2) Bedside telephone was a lifeline (3) Every time someone came or nurse said there was a telephone call for me was a huge boost. (4) Informed by doctor [of diagnosis] in open ward (5) No one offered the hospital pastoral service. I dont know if they are available at any time. (6) When the vicar didnt come I did not pester the nursing staff as they were busy and I thought were there to deal with my physical pain rather than spiritual needs. (7) Would be nice if nursing staff were caring enough to ask if they would like someone to pray with. (8) Everyone was supporting and understanding. (9) Professional, helpful and sympathetic approach felt this was supportive to me and my family/friends who visited. (10) I was given bad news by the doctors on a ward round when my husband wasnt present. I feel no one responded (none of the nurses) to my emotional or spiritual needs. (11) A general seeking of assurance (this was actually provided by nursing staff but not with any spiritual reference) (12) The nurse at night allowed me to cry. She remained with me just sitting by me. She didnt have an arm around me just sat offering me a cup of tea or water from time to time. I felt accepted that way. I remember she did say I could speak to the hospital chaplains if I wanted to the day staff would organise it for me. The chaplain did visit me and I did nd it helpful. My own pastor and church friends visited and this was most helpful of all of course. (13) I was satised with my treatment by the staff, they explained anything that I and my family/friends were unsure of. (14) A degree of sensitivity seemed to be missing (when offering objective advice) (15) On the whole my stay in hospital was a positive experience. (16) Nothing anyone could have done, would have healed the pain and tears we were going through at this time, but everything they did, they did so as passionate and as caring as they could have. (17) Did the job they were supposed to do and didnt expect any more. Provided medical care (18) Received tip top healthcare and received the job that was expected of them and didnt expect anymore. Nurses werent involved in spiritual care.

Sub-categories of nurse implemented strategies to meet neuro-oncology patients spiritual needs patient reported Flexibility with hospital policies Communication link to family

Privacy Religious support

Emotional support/ supportive/sympathetic

Company/reassurance

Providing explanations/ practical support Sensitivity Positive caring environment

No expectation of nurse implemented spiritual support

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Nursing practice issues Table 3 Other strategies to meet neuro-oncology patients spiritual needs Other strategies to meet neuro-oncology patients spiritual needs Support of family/friends

Investigation into the spiritual needs of neuro-oncology patients

Illustrative examples from the patient questionnaire data (1) Was so important for wife to come daily. (2) Support came from family and friends. (3) Not helped by nurses but chaplain was a comfort. Found it very comforting. (4) Ive always been a person that has always believed there are other ways of healing, other than medicines that are prescribed by the doctors. I believe in faith healers and herbal treatments. (5) I think, like most people, I couldnt quite believe what I had got, I tried to put it to the back of my mind so I didnt get too upset (6) With me it was either, laugh or cry and as I am a jolly person I opted for laughter to help get me through. (7) Ive always been so determined and tried to be as positive as possible. Although this wasnt always the way at times.

Religious/chaplaincy support

Faith/belief

Denial

Maintaining positive attitude/laughter

Taylor 2003a, Murray et al. 2004). The patients reported needs for emotional support, family support, loneliness/need for connection and religious needs. The nding that patients with brain tumour express spiritual needs of loneliness and a need for connection supports previous research ndings that neuro-oncology patients experience depression, isolation and a feeling of being deserted (Strang & Strang 2001, Strang et al. 2002). Patients identied a need for reassurance and solitude. It is interesting that both solitude and loneliness were identied as spiritual needs with solitude identied as the positive extreme of being alone. The nding with regard to the participants feelings that oscillate from loneliness to solitude is unique to this study because other studies have not identied this experience featuring in patients with cancer. Patients who value peace and solitude may appreciate being left alone so they can experience this. Nurses need to be sensitive to

patients who need solitude and create time and space for patients to experience peace and quiet. In the acute neurosurgical setting, this is likely to be problematic as the constant activities in such an environment inevitably lead to intrusion into the patients space. It would be difcult to reduce levels of activity as the patients physical condition in this setting requires high levels of input. Patients who express a need for solitude may be indicating that they do not wish healthcare professionals to be involved in their spiritual care and nurses need to respect this. Dossey (1993) believes that patients generally want to keep their spiritual feelings private and are not willing to share these feelings with medical staff. It should be noted, however, that Dosseys theories are based on working with strongly religious patients who are likely to have access to spiritual support through their religious community. Several patients denied having any spiritual needs during their hospital stay which has been found in previous interviews of cancer patients (Taylor 2003a). McSherry and Ross (2002) point out that it should not be assumed that all patients have spiritual needs and that they require help with these needs. It may be that these patients interpreted the words spiritual and religion interchangeably and as they did not attach themselves to any particular religion they reported having no spiritual needs. If the term spiritual needs was presented in a way that was more accessible to the layperson, these participants may have reported some spiritual needs. Participants of future studies could be asked to participate in a study investigating aspects of their quality of life, and questions could focus on specic aspects of spirituality such as what gives them meaning and purpose in life. Asking a patient to describe their spiritual needs may be the equivalent to telling them they have a diagnosis of a left temporo-parietal grade 4 glioma. The layperson is unlikely to grasp the full meaning of this, but if it is simplied to being described as a fast growing brain tumour located on the left side of the brain, most people will be able to understand what is happening. It is legitimate for health care professionals to apply the term spiritual to a patients needs even if the patient themselves do not recognise the validity of the term (Draper & McSherry 2002) as there is research evidence that some patients resort to spiritual coping mechanisms during critical junctures in their lives such as cancer diagnosis (Aldridge 2000, Murray et al. 2004, Narayanasamy 2004, Lundmark (2006). Patients with cancer themselves have indicated in previous studies that they had difculty understanding the concept of spiritual need (Hermann 2001, Taylor 2003a). However, there is evidence to suggest that spiritual needs are central to some patients with cancer, with some of them being prompted by a need to search for
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meaning and spiritual distress as they grapple with such questions as Why me? and What happens next?. Spiritual distress manifests as fear, uncertainty and loss of control in some patients with cancer. In this regard, our ndings are consistent with other evidence that neuro-cancer patients also experience needs that could be described as spiritual needs (Murray et al. 2004). Lundmark (2006) suggests that patients with cancer may experience spiritual pain, which is dened as the painful feelings and thoughts concerning existential questions and religious conceptions. The nding that patients with brain tumours report religious needs supports previous data from cancer patients (Hermann 2001, Taylor 2003a, Narayanasamy 2006b). Religious needs were mostly concerned with talking to the hospital chaplain or someone religious and access to the chapel. One patient described the need to pray as an unmet need. Another patient associated prayer with how caring nurses were. Johnson and Spilka (1991) also found patients with cancer associate prayer with caring. Lundmark (2006) provides evidence that some patients with cancer also recount the need for prayer. In contrast to this study, religious needs were reported by a minority of neuro-oncology patients in Strang and Strangs (2001) study. The religious persuasion of participants is not known, but if the group is representative of the population it would be presumed that the participants would be less religious than participants studied in the USA, as Europe is generally considered a secular society. It is interesting that patients in this study identied religious needs as a strong spiritual need but perhaps this reects the ndings of the 2001 Census that there are large numbers of believers in the UK. It may also be a difculty of denition with participants not differentiating religious needs from spiritual needs, but if this is a group of participants of a strong religious persuasion it could be assumed that they consider their religion and spirituality as one and the same as they express their spirituality through their religion. In future research, it may be helpful to collect data about the religious status of the participants. The nding that patients identify thoughts about the meaning of life as an important spiritual need supports the ndings of previous studies (Moadel et al. 1999, Cohen et al. 2000, Strang et al. 2001, 2002, Albaugh 2003, Taylor 2003a). The idea that neuro-oncology patients undergo a reappraisal of life has been identied in previous research (Strang & Strang 2001). These patients are faced with the reality that their death is near which may trigger a reappraisal of life. Patients with cancer nd that reecting on and reviewing their lives helps them to understand life events and contributes to a sense of peace (Hermann 2001).
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Reappraisal of life can enable patients to have a greater appreciation of their lives (Cohen et al. 2000) and may help them attach meaning to their situation. The idea that patients feel the need to reect on and reappraise their lives is illustrated in Table 1, segments 18 & 19. Patients questioned what they had done to deserve this and expressed feelings of guilt reecting the ndings of Cohen et al. (2000). Others observe reappraisal as an inner journey, when approaching death, cancer patients commonly embark on an inner journey involving a search for meaning as well as a reordering of priorities involving physical, psychological, social and spiritual needs (Efcace & Marrone 2002). Maintaining supportive family relationships was a major spiritual need identied by patients in line with the ndings of previous studies (Higheld 1992, Hermann 2001, Strang & Strang 2001, Taylor 2003a, Murray et al. 2004, Narayanasamy 2006a). It was particularly important for patients to have their family at their side during their hospital stay. This is illustrated in the following examples from the data:
All I wanted was my partner ...was so important for my wife to come daily. I needed my family around me and messages werent always getting through from the nurses station.

Nurses need to ensure patients are supported with maintaining family relationships during their hospital stay. Kissane et al. (2006) use evidence from their randomised control trial study to suggest that family centred care is imperative in cancer care. Patients identied a need to talk, which has also been reported in previous research (Hermann 2001). The need to talk about issues and fears related to death was important for patients (Table 1, segment 10) supporting previous studies of neuro-oncology patients (Strang et al. 2001, 2002). It could be argued that many of the needs identied are psychological needs and not spiritual needs. For example emotional support could be identied as a clear psychological need. It is inevitable that there will be some overlap between spiritual and psychological needs as a human is the sum of their biological, psychological and spiritual parts, which are all interconnected. It is important to differentiate between the psychological and spiritual aspects; however, as there is an element to a persons spiritual being that is independent of their psychology. Spirituality is the part of a person that provides meaning and purpose to their existence and this does not come under the realms of psychology. Because of interrelation between all the parts of a person, spirituality can manifest itself through psychological

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processes but it also reaches beyond the psychological processes (Swinton 2001). Spirituality does not necessarily need to involve a belief in a god or in a higher power but it allows for the possibility of nding meaning and purpose outside the boundaries of the mind through connectedness and relationships with others, the environment and/or a transcendent dimension. Many of the strategies identied including providing explanations, sensitivity, sitting with and talking to patient, allowing expression of emotions, comfort, empathy and providing time and listening t in with the concept of presencing. Presencing has been described previously in the literature as the role of just being there to empower a person and share their loneliness (Golberg 1998, Dunniece & Slevin 2000). The ndings here support the notion that this is an important component of spiritual care. Patients also had concerns about the spiritual needs of their loved ones (Table 1, segment 1). Previous studies show that relatives of patients with cancer have spiritual needs in relation to the patients diagnosis (Strang et al. 2001, Taylor 2003a,b, Murray et al. 2004, Taylor & Mamier 2005). Future studies should investigate the spiritual needs of relatives of neuro-oncology patients and uncover how these can be met by the UK health service. Nurses must be careful not to pander to the wishes of the family. Some families may override the needs and wishes of the patient in the spiritual context. While it is important to assess the patients social construct in relation to family and relationships, it is important to ensure that when assessing spiritual needs these are actually the spiritual needs/wishes of the patient and not those of the family. Eight of the 21 patients in this study completed the questionnaire with the help of family members or with family members present. In future research and in clinical practice, data about patients spiritual needs may be best collected from the patients alone to ensure that it is solely their spiritual perspective that is recorded. That is not to say that the familys spiritual needs are not important but just that it needs to be acknowledged that their spiritual needs may be different and possibly conict with those of the patient.

despair, religious needs, reassurance, meaning and purpose, plans for future/re-establishing a sense of normality and solitude. Of signicance is that neuro-cancer patients experience oscillated between loneliness and wanting solitude. The evidence also suggests that some patients would like support from nurses in the neurosurgical setting with these spiritual needs but that this is not the case for all patients. Further research is required to explore how nurses can support neuro-oncology patients with their spiritual needs and whether this should in fact be a nursing role. The data collection was not exhaustive in this study and further in depth research of the spiritual needs of neuro-oncology patients would add to the literature. This research does however serve its purpose in providing some evidence that spiritual care of neuro-oncology patients appears to be important in the neurosurgical setting.

Implications for practice

This research indicates that some patients with brain tumours do have spiritual needs and that these needs are similar to those reported in previous research of patients with other types of cancer. Spiritual needs included family relationships, emotional support, loneliness, religious needs, need to talk, reassurance, anxiety, solitude, denial, plans for the future, thoughts about meaning of life, end of life decisions and discussion of beliefs. Patients identied strategies that could be used by nurses to assist neuro-oncology patients with their spiritual needs. Although the effectiveness of nursing interventions was not clear there is some evidence that presencing (Golberg 1998, Dunneice & Slevin 2000) may be a major strategy nurses can use to support patients spiritually. Other ways nurses can provide spiritual support for neuro-oncology patients are being exible with hospital policies, encouraging family relationships, providing privacy and providing religious support. Although it was not clear whether all these strategies were helpful for patients, it provides a starting point for nurses in the neuro-surgical setting for ways that they can support neuro-oncology patients with spiritual needs. The support of family was particularly important for maintaining patients spirituality. Unanticipated conversations with participants provided additional information about the patients spiritual needs that was not extracted using the questionnaires. This indicates there are likely to be further spiritual needs in this patient group that were not uncovered here. Future research is required using in-depth interviews to conrm the spiritual needs identied here and explore further if and how nurses can meet these needs. In future research, it may
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Conclusion
This research supports the emerging literature that patients with cancer have spiritual needs. It provides new evidence that neuro-oncology patients in the UK specically have spiritual needs during their stay in the acute neurosurgical environment. These spiritual needs are: family support, emotional support, need for connection, loneliness/state of

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A Nixon and A Narayanasamy

also be useful to investigate the role of the multidisciplinary team in spiritual care as the patient data indicates that patients sometimes nd alternative strategies to meet their spiritual needs without involving nurses. Furthermore, the data indicate that relatives of patients with brain tumours have spiritual needs that can be effectively supported by nurses and this aspect needs to be explored further to establish the nature and prevalence of relatives spiritual needs and whether they conict with or are in line with the patients spiritual needs.

Acknowledgement
This work was supported by Cancer Research UK (CUK) grant number C19648/A6216. The authors would also like to thank Dr David Levy (Neuro-oncology Consultant) and Helen Lee (Neuro-oncology Nurse Specialist) for their help with recruitment of participants for this project. Thanks also to all the patients and nurses who agreed to participate in this research, and provided such a rich source of data.

Contributions
Study design: AN; data collection and analysis: AN, Aru N and manuscript preparation: AN, Aru N.

Conict of interest
None.

References
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Appendix 1
An Investigation into the Spiritual Needs of Patients and How these are met by Registered nurses in the Neurosciences Setting

Patient questionnaire
The purpose of this questionnaire is to investigate the spiritual needs of patients with a diagnosis of a brain tumour. Because spirituality is complex, it may be helpful to think about the following denition before answering the questions in the following paragraphs: Spirituality is the non-physical part of our life which is considered to be the essence of our being. It gives meaning and purpose to our existence. Some associate it with religion, whilst others do not. Healthcare professionals are responsible for providing holistic care which requires attention to the body, mind and spirit. You may wish to look back at this denition while completing the questionnaire. Please complete the following by marking under or circling each answer that relates to you: 1) Length of time since diagnosis of your brain tumour.
12 months 35 months 68 months 911 months 1 year or more

2) Are you female or male?

Male Female

3) How old are you?

1829 3039 4049 5059 6069 7079 8089 9099

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4) What is your ethnic origin?

Now in relation to this incident please answer the following questions. Please try and give as much detail as possible in response to these questions: 1) Please try to describe the situation which led up to the event where you feel you had spiritual needs. 2) Thinking back to then, at the time what would you say were your spiritual needs? 3) Thinking back again to the event where you had spiritual needs during your hospital stay describe what the nurse did towards helping you to meet your spiritual needs. Please be as detailed as possible from what you can remember. 4) Please describe how the nurses actions and response to your needs affected you and your family. If you are able to think of more than one occasion where you had spiritual needs during your hospital stay please answer the questions in question 7 for all such occasions you can recall. I would appreciate your efforts to recall these occasions if you can. Continue on a separate piece of paper if necessary. The more occasions and the more detail you can provide the better. If after completing this questionnaire you nd you have been affected emotionally by remembering things that happened or you feel you need to discuss any issues raised further I will appreciate you telling me and I am available to support you. _____, the nurse specialist who works with Dr X is also available to support you if you wish to speak with her. You are free to withdraw from this study at any time should you wish to do so. Thank you for your participation.

5) Were you aware of your diagnosis during your hospital stay? 6) If you werent aware of your diagnosis during your hospital stay what did you understand to be your reason for your hospital admission? 7) Please read the denition above again if you need to and think back to an occasion during your hospital stay when: 1 You feel you had spiritual needs. 2 Were you helped by nursing staff to meet your spiritual needs? If so how? 3 If you werent assisted with your spiritual needs by nursing staff was there opportunity for them to do so? 4 What were the effects on you of the support/lack of support you received from nursing staff regarding your spiritual needs?

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This document is a scanned copy of a printed document. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material.