- Email: [email protected]
Listening to the voices of patients with cancer, their advocates and their nurses: A hermeneutic-phenomenological study of quality nursing care
European Journal of Oncology Nursing 12 (2008) 436–442
Contents lists available at ScienceDirect
European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon
Listening to the voices of patients with cancer, their advocates and their nurses: A hermeneutic-phenomenological study of quality nursing care Andreas Charalambousa, *, (I)Rena Papadopoulosb, Alan Beadsmoore c a
Transcultural Centre of Middlesex University, Cyprus Technology University, Cyprus Research Centre for Transcultural Studies in Health, School Ethics Committee, UK c The Centre for Excellence in Professional Learning from the Workplace, University of Westminster, UK b
a b s t r a c t Keywords: Quality nursing care Patients with cancer Hermeneutic-phenomenology Ricoeur Interpretation theory
This article presents the findings from a hermeneutic-phenomenological study looking at the meanings of ‘‘quality nursing care’’ through the experiences of patients with cancer, their advocates and their nurses. Twenty-five patients were interviewed from which fifteen also participated in two focus groups. Six patients’ advocates participated in a focus group and twenty nurses were individually interviewed. The informants came from the three major hospitals in Cyprus which provide in-patient cancer care. Patients’ advocates came from the two major cancer associations in Cyprus. Having analysed the data, seven major themes were identified: receiving care in easily accessible cancer care services, being cared for by nurses who effectively communicate with them and their families and provide emotional support, being empowered by nurses through information giving, being cared for by clinically competent nurses, nurses addressing their religious and spiritual needs, being cared for in a nursing environment which promotes shared decision-making, and patients being with and involving the family in the care. These findings stress the need to integrate these aspects in the care of patients with cancer. In doing so, nurses will need support and adequate training in order to acquire the relevant skills towards better caring for the patients. Ó 2008 Elsevier Ltd. All rights reserved.
Introduction This article is based on a study aiming to disclose the meaning of quality nursing care for patients with cancer, patients’ advocates and their nurses. Quality nursing care is a complex phenomenon and the people involved in the care receiving–caregiving process influence its meaning. The present study attempts to draw attention to the phenomenon by illuminating the meaning of quality nursing care as it is disclosed in patients’ with cancer, patients’ advocates and nurses’ narratives. Cancer remains a major cause of morbidity and mortality within Cyprus affecting one in four of the population (Cyprus Statistical Services, 2005). Alongside the nature of cancer has changed dramatically in recent years, including shorter in-patients’ stays, an increasing older cancer population and significant improvements in treatments, outcomes and effectiveness. Despite the recent changes to service delivery, little attention in terms of the quality of health services has yet been focused on patients with cancer and nurses. In light of these factors, the need to focus the exploration of the experience on those involved in the delivery and receipt of the
* Corresponding author. Tel.: þ357 99693478/25634849. E-mail address: [email protected] (A. Charalambous). 1462-3889/$ – see front matter Ó 2008 Elsevier Ltd. All rights reserved. doi:10.1016/j.ejon.2008.05.008
care and its potential value to nursing practice within the cancer care setting is important. Hogston (1995) asserts that nursing has struggled since the 1960s to capture its meaning and emphasised that it has many constituents which include ability, performance, competence, clinical judgment, knowledge, skills and accountable behaviour. Quality has been termed as a ‘‘nebulous concept’’ (Van Maanen, 1981) because it lacks constant definition in the literature (Redfern and Norman, 1990) and because terms such as quality assurance, standards of care and quality control are often used interchangeably (Nielsen, 1992). Lang (1976) defined quality in nursing care as a ‘‘process’’ which seeks to attain the highest degree of excellence in the delivery of patient care. Harvey (1996) attempted to classify the development of quality in health care by drawing on experiences within the industrial quality movement. Quality nursing care as proposed by Kunaviktikul et al. (2001: p. 782) took into consideration the perspectives of nurse administrators, staff nurses and patients and found that ‘‘quality nursing care is nursing’s response to the physical, psychological, emotional, social and spiritual needs of the patients provided in a caring manner, so that the patients are cured, healthy, to live normal lives’’. Similarly Williams (1998: p. 811) described quality nursing care as ‘‘meeting all the needs of the patients or clients you are looking after whilst low quality nursing
A. Charalambous et al. / European Journal of Oncology Nursing 12 (2008) 436–442
care was related to the omission of nursing care required to meet patients’ needs’’. According to Oermann (1999) patients’ define quality nursing care as having nurses who were concerned about them and demonstrated caring behaviours, were competent and skilled, communicated effectively with them and taught them about their care. Redfern and Norman (1990) define quality as totality of features and characteristics of a product or a service which bears on its ability to satisfy a given need. Furthermore, Redfern and Norman (1990: p. 1262) assert that quality of nursing care must also incorporate considerations of equity (care being fairly distributed), accessibility (being available and not unduly restricted by time or distance), acceptability (provided in such a way as to satisfy reasonable expectations of patients, providers and the public), efficiency (resources not being wasted on one person to the detriment of another), effectiveness (achieving the intended benefit for the individual and the community) and, perhaps most important, appropriateness (meeting the actual needs of individuals, families and communities). Any attempt to improve the quality of nursing care must begin with a definition of the term ‘‘quality nursing care’’. Different definitions for ‘‘quality of nursing care’’ have been introduced in the public sector, the private sector (Normand et al., 2002) and more recently by patients themselves (Radwin, 2000). This view is strengthened by Gunther and Alligood (2002) who comment that all in health care approach the definition of quality from a different perspective: society judges utilitarian benefits, payers the economic outcomes, patients the personalised attention received, and providers the congruity with professional worldviews and standards. The literature review revealed the absence of studies investigating this issue under the specific cultural background of health care in Cyprus. Therefore, in order to deepen the understanding of the concept ‘‘quality nursing care’’, it seems important to study patients’, advocates’ and nurses’ lived experiences of receiving and providing quality nursing care. Aim of the study The aim of the study was to investigate the views of patients with cancer and to explore their experiences in relation to quality of nursing care in the Cyprus National Health and Insurance Scheme (private and public). In the light of the patients’ views, the views of the nurses providing services to these patients, and the views of key advocates from the cancer associations were explored. Methods Study design, samples and settings The hermeneutic-phenomenological method The decision to choose the hermeneutic-phenomenological ideas of Ricoeur was mainly based on four aspects. Firstly, Ricoeur’s theory of interpretation avoids the Cartesian subject/object split, thereby making it useful for the researcher seeking to explicate intersubjective knowledge (Charalambous et al., in press). This aligned with our aim to seek to explore the issue of quality of cancer care holistically, focusing both on the experiences related to the body and mind of the patients and nurses. Secondly, Ricoeur (1976, p. 66) asserts that ‘interpretation is the hinge between language and lived experience’. This is especially so with research interviews (i.e. narratives) and focus groups where lived experience is expressed through language then transcribed into a text and interpreted. Thirdly, Ricoeur’s hermeneutic approach takes into consideration the values, beliefs, and culture (i.e. historicity as Ricoeur calls it) of the specific context of the participants (and of the researcher) which are essential elements that need to be explored
437
during the data collection and interpretation processes (Charalambous et al., in press). Finally, Ricoeur rejected the idea of bracketing allowing to the researcher to adopt a more active role in the interpretation process bringing into the study his/her experiences. Therefore, rather than suspending our preconceptions in this study, we were active participants in the interpretive process and not mere passive recipients of knowledge. This study employs a phenomenological-hermeneutic approach as this was inspired by Ricoeur (1976, 1991) and modified by Lindseth and Norberg (2004). Using this phenomenologicalhermeneutic method, the researcher attempts to uncover the significance of experienced feelings and thoughts behind the patients’ stories (Howritz et al., 2002). It is not of primary importance exactly what the patient chose to express, but rather the most likely content of the text. In other words, the task is not only to understand how the interviewed patients experience their situation, but also to help the interviewer understand and interpret the situation of each patient. The texts are processed in order to capture the significance of the statements in the interviews (Norberg et al., 1994). The method of interpretation proceeds through three phases, which constitute a dialectical movement between the whole and the parts of the text (hermeneutic circle) and between understanding and explanation. The interpretation process takes its point of departure in Ricoeur’s theory of interpretation and that the first phases are the naı¨ve reading/interpretation followed by the structural analysis. In the final phase the text is again read as a whole, the naı¨ve understanding and the themes are reflected on in relation to the literature and a comprehensive understanding is formulated. During the naı¨ve reading phase, the researcher does not perform any kind of analysis but on the contrary he acquires a first naı¨ve guess of the meaning of the text within its context. The text is read several times and the surface understanding achieved provides direction for the next phase, that of structural analysis. In the structural analysis, the connections and pattern of the text are uncovered by dividing the text into meaning units, condensed meaning units, sub themes and themes (Howritz et al., 2002) and validate/invalidate the understanding gained from the naı¨ve understanding. In the final interpretative phase, the text is reviewed as a whole with the naı¨ve reading and structure analysis taken into consideration. The study took place in the period of 2006–2007, at the three major hospitals in Cyprus which provide in-patient cancer care, the Limassol General Hospital, the Bank of Cyprus Oncology Centre and the Nicosia General Hospital. The empirical phase involved a series of narratives with 25 patients with cancer, with 20 cancer nurses, two focus groups with the patients and a focus group with 6 key advocates from the cancer associations. All the data were collected by the primary researcher at the privacy of the patients’ rooms, the ward managers’ office and the cancer associations meeting room. The samples’ size was decided based on the concept of ‘‘saturation’’ or the point at which no new information or themes are observed in the data. Patients were purposively selected from the patients’ ward list primarily based on their ability and their willingness to participate. Furthermore, certain selection criteria were set: participants were adult patients (ranged in age from 21 to 68 years) with cancer (lung, liver, prostate, breast, stomach, intestine) of both sexes and whose health had required hospitalised treatment. The exclusion criteria included patients that required treatment in protective isolation, newly diagnosed and terminally ill patients. Eligible nurse participants were from both sexes and all levels of nursing staff with at least one-year experience in cancer care departments. Finally, the key advocates were members of management committees and policy makers of the cancer associations with wide experience in issues related to cancer nursing and palliative care. Once, participants were selected, they were fully
438
A. Charalambous et al. / European Journal of Oncology Nursing 12 (2008) 436–442
informed in relation to the study and what was expected of them. A written consent was retrieved in order to participate.
themes to the meaning of quality nursing care. Their opinions were grouped into the following themes based on the analysis process:
Ethical permission The informants were guaranteed anonymity in the reporting of all results and were assured that the data would not be shared with anyone except the researchers. The informants were also informed of their right to withdraw their consent to participate at any time without repercussions. The study was reviewed and approved by the ethics committee of the Middlesex University – Health Studies Ethics Sub-Committee (HSESC) and the Cyprus Ministry of Health.
Being treated for cancer in easily accessible services. Being cared for by nurses who provide emotional support and effectively communicating with them and their families. Being given health-related information by nurses. Being cared for by nurses with clinical competencies. Having their religious and spiritual needs met by the nurse. Being cared for by nurses who promote shared decisionmaking. Promoting family presence and involvement in the care.
Data collection The narrative approach is suggested by Ricoeur for exploring the lived experiences of people. Certain stem questions were held in mind in the narratives which emerged from the literature review and the review of the Cypriot NHIS (National Health and Insurance Scheme). These were broad open-ended questions used to encourage narration rather than to elicit specific information. The interviewer asked the informants ‘‘What does the term ‘‘quality nursing care’’ means to you?’’ They were also asked: ‘‘please narrate your experiences of quality nursing care being provided to you’’. The narratives were tape-recorded and transcribed verbatim, including the silences, laughter and crying. The narratives were performed in the participants’ native language which was Greek. Six narratives were translated in English and then back-translated in Greek by the researchers in order to assure conceptual equivalence. Translation and back-translation were performed simultaneously, adopting therefore a parallel blind technique. Data analysis The interpretation of the data proceeded through three phases based on Ricoeur’s interpretation theory. During the first phase, the researcher reads the text as a whole to become familiar with the text and begins to formulate thoughts about its meaning for further analysis. The naı¨ve interpretation is a preliminary interpretation of the whole. Structural analysis follows as the second step and involves identifying patterns of meaningful connection. This step is often referred to as an interpretive reading. Structural analysis is employed to discard or validate these first guesses at meanings according to Soderberg and Norberg (1993). There are several kinds of structural analysis such as thematic analysis, search for narrative structures, and search for deep structures in the form of metaphors. For the purpose of this study, thematic structural analysis was used, i.e. a way of seeking to identify and formulate themes. Thirdly, a comprehensive understanding is formulated, a more sophisticated mode of understanding emanating from and supported by the first two phases (Ricoeur, 1976: p. 74). During this phase the interpretation of the whole follows and involves reflecting on the initial reading along with the interpretive reading to ensure a comprehensive understanding of the findings. In formulation of the comprehensive understanding, the meanings in the text have evolved in a critical dialectic between the reader’s preunderstanding and parts and the whole of the text, and this understanding is re-contextualised in light of relevant literature to deepen and widen the understanding of the text (Ricoeur, 1976; Lindseth and Norberg, 2004). Findings and discussion Patients and the key advocates have expressed similar views when they were asked to comment on the meanings of the term ‘‘quality nursing care’’. With the exception of the first main theme which raised controversy among patients, advocates and the nurses there was a consensus as to the contribution of the rest of the
Being treated for cancer in easily accessible services One understanding of the meaning of quality nursing care, as disclosed through patients’ and advocates’ narratives, is that quality nursing care is closely related to issues such as availability and (fair) access to cancer services. ‘‘How can you speak of quality nursing if the service is not available or easy to get? I am not from this town and I have to travel for two hours to get treated’’ (M-68, PI-15) ‘‘It is rarely a simple task to get treated for cancer [.] accessing the services can be a burdening experience both for the patient and the family’’ (FG with PA). Accessing cancer care services in Cyprus is according to informants problematic for specific groups such as people living in remote areas (rural), with low incomes, pensioners, elderly, people with physical disability and lone people. Poor patient access to cancer services reaches its peak when there is a combination of these categories. For example it was found that lone elderly patients appeared to face many problems in accessing cancer services. Elderly patients (men and women) with no access to a car considered, travelling to get treated as a burdensome experience but with financial burden as well. Contrary, for younger patients travelling was not reported as a problem because these patients appeared to have an access to a car. Informants assert that the problems of availability and access create inconvenience not only for the patients but for their families as well. The nurses in their majority disagreed with the view expressed by the patients and their advocates in relation to the meaning of quality nursing care which is perceived as availability and access to care. ‘‘Nursing care is nursing care and its quality begins as soon as the patient is admitted in the ward and the nurse begins to care for the patient [.] I can hardly see the connection between the two [meaning quality nursing care and access]’’ (M-31, SNI-6). There appears to be an oxymoron here. While nurses advocate in their narratives for a ‘‘holistic’’ care they have this isolated notion of nursing which fails to take into consideration issues such as access to care. However, the literature suggests that access and availability are more general issues which are related to the quality of the care as suggested by Oermann (1999) and which can also negatively or positively influence the quality of the provided nursing care. She concluded that it is difficult to view quality in isolation, something that the nurses in this study have implied. Being cared for by nurses who provide emotional support and effectively communicating with them and their families It is evident in the narratives that informants consider communication between nurses and patients and their families as an important aspect of the care which recurrently has been related to quality nursing care. ‘‘Quality nursing care includes many different things but for me being able to communicate with my carers is perhaps the most important. Otherwise is like being treated by ‘‘mute’’ carers’’ (F-57, P-1). The magnitude of its importance has been raised by the advocates who claimed that quality nursing care can only be
A. Charalambous et al. / European Journal of Oncology Nursing 12 (2008) 436–442
achieved through good communication between nurse and patient. ‘‘Without this essential component [.] nursing care cannot be complete or of high quality’’ (FG with PA). Informants’ conceptualisation of the term ‘‘communication’’ was obtained through the narratives. They held a wider understanding of the concept which extended beyond the simple provision of information to conveying of emotions, thoughts and worries, valuing therefore a therapeutic form of communication. Informants expressed the opinion that there are problems when communicating with the nurses coinciding therefore with Sowden et al. (2001) who assert that most common complaints made by patients with cancer are about poor communication and inadequate information. Generalisations, however, should be avoided since with some nurses such good communication exists emphasising on the ability of the nurses to communicate emotional messages to and from patients. Therefore in spite of the importance that informants placed on communication they believe that in clinical practice it remains persistently one-sided and hermetic, making it difficult to being informed about their health and being comforted to express their unvoiced needs, worries, and feelings. A major problem that patients reported on in our study was the fact that many nurses in the process of communicating information to the patients failed to tailor this information to suit patient’s educational background and his/her general level of comprehension. Earlier, Harris (1998) concluded to the same findings with additional emphasis on the patients’ cultural orientation in those cases that the patients came from different cultural backgrounds. Finally, a Scottish randomised control trial has also shown that patients with cancer prefer information based on their own medical records to general information (Jones et al., 1999). Being given health-related information by nurses While the informants related the provision of quality nursing care with adequate informing of the patient on his/her healthrelated issues they asserted that generally they did not receive enough information during hospitalisation. ‘‘Quality nursing care is partly to keep us informed and it’s the nurses’ job for doing so’’ (F-58, PI-11, FG-1). Few patients asserted that the information they received were sometimes vague and misleading failing to give an objective picture of their health status and how serious their problems really were. ‘‘The staff [nurses and physicians] does not take you into their confidence and hardly give you any meaningful information or when they give it to you, you are lucky if you understand a few words’’ (F-21, PI-6, FG-2). ‘‘Quality is achieved when the patient is informed [.] an informed patient is more likely to share decisions responsibilities and also be an active participant in his/her own care’’ (FG with PA). This is grounded in the beliefs held by the nurses and other health care professionals that patients are incapable of handling disease related information provided to them. ‘‘Providing adequate information to patients can be psychologically harmful for them. What you do not know will not heart you [.] many of these patients simply cannot handle this kind of information’’ (F-31, SNI-7). A wide body of literature supports the views expressed by the patients that health care professionals might underestimate their desire for and ability to cope with health-related information. This assumption might lead to the provision of limited information to patients with cancer and their families (Coulter et al. 1999; Smith 2000; Sowden et al. 2001; Tamburini et al. 2003). Many were the patients that related the provision of information with the presence or absence of good communication with the nurses. Indirectly a patient expressed the opinion that patients seem to communicate better with the nurses rather than the physicians. When this issue was raised in the focus groups there was an agreement among the patients that this was indeed a fact. In order to justify their opinion the informants claimed that ‘‘the physician is around only for a few
439
minutes during the day and almost never at night’’ (FG-1), ‘‘the physician during the round in the morning rarely answers to our questions, because we have so many and there is so little time to ask them, therefore is necessary to ask the first question (or problem) that troubles us at the moment, thank God we have the nurses to fill in the gaps [.]’’ (FG-2). As nursing practice is moving away from paternalism, patients are becoming increasingly more involved in decision-making through the provision of information, and there is evidence to suggest that this involvement promotes patient satisfaction. Effective communication of information is an essential prerequisite for enabling patients to make informed decisions about their care. Patients rely on the information relayed to them by health care professionals and it is possible that providing patients with adequate information not only permits informed decision-making but also improves coping and leads to better psychological health (Mallinger et al., 2005). Being cared for by nurses with clinical competencies Informants expressed the view that for the provision of quality nursing care, it is necessary that the patients are cared for by clinically competent nurses. ‘‘Clinical competency is essential for quality nursing care and should not only be about the qualities that you have but it should also be about the ability to collaborate and coordinate the team in the best interest of the patient’’ (M-55, WMI17). Radwin (2000) in a qualitative study with 22 oncology patients aimed at analysing theoretically their perceptions of the attributes and outcomes of quality nursing care. Eight attributes of quality nursing care emerged from the data. One of these attributes was professional knowledge. As the researcher asserts in the analyses two aspects of professional knowledge were identified: experiential knowledge and technical competence which referred to the importance of skills. Patients and advocates in this study similarly supported the perspective that quality of nursing care means being cared for by clinically competent and knowledgeable nurses. A study by Radwin et al. (2005) investigated patients’ with cancer descriptions of nurses and nursing care. A total of 461 patients answered the question ‘‘In general, how do you feel about the nurse and nursing care’’. Radwin et al. (2005) assert that a typology of four concepts reflecting patients’ descriptions of their nursing care emerged from the data. These concepts were laudable, caring, professional and outcomes. The findings of this study support a number of categories included in the first three concepts. The concept of ‘‘laudable’’ included the category ‘‘approachable’’ an aspect of the nurse’s qualities that patients with cancer highlighted as been part of the clinically competent nurse by stating that the nurses are ‘‘being there’’ (F-21, PI-6, FG-2). Through a trusting relationship patients feel comfortable to open up to their nurses and speak with them ‘‘not only about treatments, diseases but more personally’’ (F-42, PI-16, FG-1), an aspect that was identified by Radwin et al. (2005) as ‘‘personable’’. Within the concept of ‘‘caring’’ were data placed in categories labelled supportive, concerned helpful, sensitive, comforting and empathetic. The findings of our study supported some of these categories. The patients stressed the importance of the nurse being supportive, understanding, comforting, and helpful. In relation to the category ‘‘helpful’’ a patient said ‘‘She would do anything she can, so my concerns would be heard and even met’’. Another patient commented that ‘‘[the competent nurse] is making us feel emotionally comfortable’’, whilst a patient referring to the support she experienced by the nurse caring for her said that ‘‘[.] I had to do a dangerous procedure.the nurses were so well-informed and understanding.They felt for me’’ (F-21, PI-6, FG-2). The concept labelled ‘‘professional’’ was defined as holding the standards expected of a nurse in knowledge skills and demeanour. The
440
A. Charalambous et al. / European Journal of Oncology Nursing 12 (2008) 436–442
concept included data placed in categories labelled knowledgeable, responsible, coordinated, dedicated and demeanour (Radwin et al. 2005). These findings coincided with the attributes that patients held on what constitutes a clinically competent nurse expressed in our study. Informants expressed the same view as to what a ‘‘competent nurse’’ is; they commented that is the one that ‘‘knew what she was doing’’ (F-21, PI-6, FG-2). Informants also supported the view that competent nurses are a prerequisite for delivering quality nursing care, asserting that ‘‘[competent nurses] are the key to quality nursing care’’ (FG with PA). Finally, the informants stressed the importance of skills for any competent nurse. Data falling in this category were labelled as ‘‘technical competence’’ a term used by Radwin (2000). Having their religious and spiritual needs met by the nurse Informants in this study agreed that the meaning of quality nursing care relates to having the patients’ spiritual and religious needs being met by the nurses. ‘‘I am expecting the nurse to provide the means to get this kind [religious and spiritual] of care in here’’ (F-68, PI-21, FG-1). ‘‘Praying, reading the Holy Bible took my mind off the constant thought of death [.] through the nurse’s caring I saw what the true meaning of life is’’ (F-68, PI-25, FG-2). In the literature the terms ‘‘spirituality’’ and ‘‘religion’’ have suffered from a multiplicity of definitions often causing a level of confusion. For the purpose of this study religion is communal, particular and defined by boundaries. It is spirituality incarnated at the social and cultural level. Religion takes the boundless and binds it into the limitations of language and culture, even as it may also transform culture (Pargament, 1997). Spirituality was defined by Reed (1992) as the part of being human that seeks meaningfulness through intra-, inter-, and trans-personal connection. These definitions coincide with the way the informants viewed their spiritual and religious care in this study and the fact that the terms ‘‘religious’’ and ‘‘spirituality’’ were used interchangeably. Comparing the results of this study with the results of other studies it was shown that some patients expected nurses to support their spiritual and religious needs while nurses focused on helping the patients with their spiritual needs. Patients with a religious background in this study suggested that their religious needs should be addressed and most importantly respected by the nurse as part of the care and support provided to the patient to gratify his/her spiritual quest. The informants in the narratives identified religious and spiritual needs for which while they expected the priest to meet they also valued the nurses’ contribution even though it was significantly less than that of the priests. Informants emphasised on the importance of these needs being met by the nurses as part of a holistic approach to care. ‘‘Quality nursing care needs to be holistic care [.] every need that the patient has needs to be addressed whether this is spiritual, physical, or religious’’ (FG with PA). However, Taylor and Mamier (2005) assert that there is scanty empirical basis to support this conclusion. Taylor (2003) in a small-scale research study with 28 patients and family members living with cancer found mixed results with only a small percentage expecting nurses to provide spiritual care. However, a percentage of patients were enthusiastic about receiving it. On the same topic two older studies concluded that patients with cancer did not consider nurses as primary spiritual care providers. The same studies suggested that patients preferred their spirituality been addressed by family members, chaplains and clergy (Soderstrom and Martinson 1987; Highfield 1992).
the decision-making process can enhance the quality of the provided nursing care. ‘‘Quality nursing care relates to the patient increased involvement in his care. This may be shared decision-making or other strategies to increase their participation’’ (F-35, SNI-9). Shared decision-making, in which patients and health professionals join in both the process of decision-making and ownership of the decision made, is attracting considerable interest as a means by which patients’ preferences can be incorporated into clinical decisions (Coulter et al. 1999). Sowden et al. (2001) assert that the shared decision model is not only desired by patients and is also being advocated as a way of promoting clinical effectiveness and more appropriate use of resources. The patients and their advocates expressed the belief that nursing care and specifically its quality is influenced by the ability patients have to participate in their own health care decisions. They believe that only through the provision of opportunities to participate and the provision of choices, empowerment can be achieved. The fact that the patients expected the nurses (and physicians) to give them the power in participating in shared decision-making processes coincides with the literature which supports that a patient must be an active informant in his/ her empowerment, indicating that nurses can facilitate and support patient’s empowerment (Laverack, 2005). The active role that the patient should be engaged to has been stressed by Kuokkanen and Leino-Kilpi (2000) who assert that empowerment is an individual process in which the person is interacting with the environment pursuing impact on his/her life. The major responsibility to invite patients as active partners in decision-making in nursing is inevitably the nurses’ since the patient is in a subordinate position and cannot be expected to take the lead. Patients’ experiences in relation to health issues should be valued as evidence contributing to the decision-making process and that partnership with health care professionals is important (Rycroft-Malone et al., 2004a). Contrary to this prerequisite of shared decision-making, informants in my study repeatedly stressed that their experiences and knowledge in relation to health issues have not been valued by the nurses, nor have been used to promote participation instead patients were often treaded with contempt. ‘‘I told her that for me this medication is not effective and asked her the reason for giving me a different one [.] I was disappointed because she ignored me’’ (F-58, PI-23). The idea of God like power of the physicians which extents to include the nurses might serve as an explanation to some of the behaviours demonstrated by the nurses. In clinical practice nurses often use the physician’s instructions to strengthen their position in their relationship with the patients. ‘‘She said to me ‘because this one is better for you’ and the physician prescribed this one’’ (F-58, PI-23). Therefore it appears that a prerequisite for decision-making is the relationships between patients and health care professionals. ‘‘The key for shared decision-making lies in the relationship between the nurse and the patient’’ (FG with PA). Particularly, it appears that the issue is the balance of power and control. Instead of having a paternalistic approach to the patient and professional carer relationships, it is more facilitating to shared decision-making if the relationship is open and equal so that patients have the opportunity to express desires, concerns, information needs and willingness and opportunities to participate in their care (Sainio et al., 2001; Buchanan et al., 1996). Further, there is a need for a context receptive for change, addressing power and authority processes, and with appropriate and transparent decision-making processes (Rycroft-Malone et al., 2004b). Promoting family presence and involvement in the care
Being cared for by nurses who promote shared decision-making According to the literature patient participation in decisionmaking has produced many debates among health care professionals. However, it seems that it is accepted that participation in
Since this is hermeneutic-phenomenological study, I considered it important to clarify what the informants referred to when they used the term ‘‘family’’. While the term family has usually been defined as an individual of blood relationship (Ferrell, 1998), it is
A. Charalambous et al. / European Journal of Oncology Nursing 12 (2008) 436–442
suggested that a broader definition is more appropriate and is best defined as those individuals considered as family by the patient. Therefore, the term family for this study included those individuals of blood relationship, friends, and significant others that the patients considered as family. The study’s findings suggest that quality nursing care is being understood by the informants as being with and involving the family in the care. ‘‘Being there for me [family] is the most important thing that gives me courage, and hope for the more difficult times to come and overcoming these’’ (F-30, PI12). ‘‘I see the role of the family as complimentary to that of the nurse for giving us quality nursing care’’ (F-44, PI-13, FG-2). These findings coincide with the belief that patients’ illness experiences cannot be understood as individualised, socially isolated phenomena (Mcilfatrick et al., 2006; Mystadikou et al., 2004). As cancer is also affecting the family rather than just the patient, the family may choose to assume a more active role in their loved ones care; that is in the hospital or at home. ‘‘When the patient becomes ill so is his/her family and the nurse needs to take this aspect into consideration when caring for the patient [.] the family can reassure the patient, convey information, offer emotional support and therefore be a valuable tool for providing quality nursing care’’ (FG with PA). Despite evidence that these supportive relationships can increase adherence to treatment and improve medical outcomes Sayers et al. (2006) assert that the impact of close relationships are likely dependent on the degree to which the patient perceives a need for family involvement. The results of this study highlighted that the patients and advocates recognised the contribution of their family in making decisions related to their care. Family members were the link between the patient and the nurse when information was provided to the patient. Their mediation assured that the information would be in a language understood by the patient and based on this the necessary decisions could be made. Furthermore, informants expressed the belief that the closeness with their family and its involvement in the care had benefits which primarily took the form of physical and emotional support (coping mechanism). Methodological reflections In the hermeneutic-phenomenological method developed by Lindseth and Norberg (2004) there are inherent components for ensuring quality. The comprehensive understanding of the present study in only one of the many possible interpretations (Ricoeur, 1976) and the interpretation presented in the one the researchers found most meaningful and more probable to be true. The decision as to which interpretations are the most (or more) probable derived through the informants’ perspectives discourse, round table discussions with the study’s researchers, and the feedback received through several conference presentations of the findings. The results of this study cannot be generalised if one employs a statistical definition of generalisability dependent on sample size and representativity. However, if generalisability is understood as being on a theoretical and conceptual level, the understanding gained from this study may be transferable to people in contexts beyond those that were studied. Hopefully, the findings can convey understandings and descriptions enabling readers to see their own situation in a new, and expanded, way. When it comes to hermeneutic-phenomenology, Ricoeur (1976: p. 78) states that it is always possible to argue either for or against an interpretation, and the credibility of an interpretation lies closer to the logic of probability than to the logic of empirical verification. Credibility is argumentative and is established in a discourse. The findings of a study achieve credibility when other researchers come to regard them as sufficiently trustworthy to rely on in their own work (Kvale, 1996: p. 245). The integrity of this work stemmed from the process of coding and categorising the data, with links made explicit and concepts defined. The fundamental point to be grasped in
441
evaluating hermeneutic accounts is that there is no such thing as an interpretation-free, objectively ‘‘true’’ account of ‘‘things in themselves’’, and that there is no technical procedure for ‘‘validating’’ that an account corresponds to this timeless, objective ‘‘truth’’ (Benner, 1994). Implications for nursing practice and contribution to knowledge The findings of this study suggest that, similarly to previous research, the term ‘‘quality nursing care’’ is a complex and multidimensional concept which can mean different things to patients and nurses (Oermann, 1999; Oermann et al., 2000; Normand et al., 2002; Radwin, 2000). This study, however, has highlighted the common aspects that patients, their advocates, and nurses share in relation to their understanding of the concept ‘‘quality nursing care’’. These common aspects can be combined together to form a consensus term of what constitutes quality nursing care adopting a different perspective from what has been suggested by researchers and scholars so far. Therefore, quality nursing care can be interpreted ‘‘as easily accessible care delivered by clinically competent nurses and supported by the family which considers the patient’s need for spiritual, religious care, communication, emotional support and information giving. Nurses often try to be professional, focusing on the main picture and trying to analyze everything on the basis of scientific explanations and interpretations such as the concept of quality nursing care; however, it was seen from this study that it is often the little and simple things that count to and appreciated by the patient. It is seemingly simple acts, such as being there, holding a patient’s hand and listening, that bring such profound changes in comfort when one is ill. The study also stressed those factors that nurses need to include in the care of the patients such as promoting their participation in the decision-making process, promoting family’s involvement in the care, better communication with the patients and family, and the provision of holistic care emphasising the increased need for spiritual and religious care. However, these aspects of the care raised by the participants also need to be considered by policy makers in Cyprus, so that nurses are empowered when practicing nursing in the clinical settings. This empowerment needs to take the shape of better preparation of the nurses who care for patients with cancer in relation to developing communication skills, training in relation to spiritual care, having the ability to fully inform the patient on aspect of his/her care, and attaining the skills to promote patient and family involvement in the care. Because this research is the first hermeneutic-phenomenological study conducted with Cypriot patients with cancer receiving cancer care, its findings have a distinctive significance for the research endeavour in the area of cancer care. It is imperative to stress that one single study, irrespective of its qualitative or quantitative design, cannot investigate any phenomenon to its full extent. The themes highlighted in this study offer opportunities for additional qualitative and quantitative research in the field of cancer care. The findings must be supplemented by further specific studies, such as exploring the meanings that spiritual needs have for patients with cancer. Researchers have so far focused on the issue of spirituality in more general terms rather than focusing on patients with cancer. Nursing research which focused on the meanings of the spiritual needs for patients with cancer would therefore be a valuable addition to the literature. Furthermore, it would be possible to explore the perspectives of family members that take upon the role of the informal caregiver in relation to ‘‘quality nursing care’’ and assuming a more active role in the care. This study has shown that family plays an important role when it comes to the care of patients with cancer and it would be beneficial to investigate the burden that the role of the informal caregiver has.
442
A. Charalambous et al. / European Journal of Oncology Nursing 12 (2008) 436–442
Conflict of interest statement This is to confirm that there weren’t any financial and personal relationships with other people or organisations that could inappropriately influence (bias) our work. References Benner, P., 1994. Interpretative phenomenology: embodiment, caring and ethics in health and illness. Sage Publications, London. Buchanan, J., Borland, R., Cosolo, W., Millership, R., Haines, I., Zimet, A., Zalcberg, J., 1996. Patients’ beliefs about cancer management. Supportive Care in Cancer 4, 110–117. Charalambous, A., Papadopoulos, R., Beadsmoore, A., 2008. Ricoeur’s hermeneutic phenomenology: an implication for nursing research. Scandinavian Journal of Caring Sciences, in press. Coulter, A., Entwistle, V., Gilbert, D., 1999. Sharing decisions with patients: is the information good enough? British Medical Journal 318 (7179), 318–322. Cyprus Statistical Services, 2005. Health Statistics. Printing Office of the Republic of Cyprus, Nicosia. Ferrell, B., 1998. The family. In: Doyle, D., Hanks, N., MacDonald, N. (Eds.), Oxford Textbook of Palliative Medicine, second ed. University Press, Oxford, pp. 355–480. Gunther, M., Alligood, M.R., 2002. A discipline-specific determination of high quality nursing care. Journal of Advanced Nursing 38 (4), 353–359. Harris, K.A., 1998. The informational needs of patients with cancer and their families. Cancer Practice 6, 39–46. Harvey, G., 1996. Quality in health care: traditions, influences and future directions. International Journal for Quality in Health Care 8 (4), 341–350. Highfield, M.F., 1992. Spiritual health of oncology patients. Nurse and patient perspectives. Cancer Nursing 15, 1–8. Hogston, R., 1995. Quality nursing care: a qualitative enquiry. Journal of Advanced Nursing 21, 116–124. Howritz, E.B., Theorell, T., Andeberg, U.M., 2002. Fibromyalgia patients’ own experiences of video-interpretation: a phenomenological-hermeneutic study. Scandinavian Journal of Caring Sciences 17, 247–264. Jones, R., Pearson, J., McGregor, S., 1999. Randomised trial of personalised computer based information for cancer patients. British Medical Journal 319, 1241–1247. Kuokkanen, L., Leino-Kilpi, H., 2000. Power and empowerment in nursing: three theoretical approaches. Journal of Advanced Nursing 31 (1), 235–241. Kunaviktikul, W., Anders, R.L., Srisuphan, W., Chontawan, R., Nuntasupawat, R., Pumarporn, O., 2001. Development of quality of nursing care in Thailand. Journal of Advanced Nursing 36 (6), 776–784. Kvale, S., 1996. Interviews: an Introduction to Qualitative Research. Sage, Thousand Oaks, CA. Lang, N.M., 1976. Issues in quality assurance in nursing. In: American Nurses Association (Ed.), Issues in Evaluation Research. ANA, Kansas City, pp. 45–46. Laverack, G., 2005. Public health: power, empowerment, and professional practice. Palgrave Macmillan, New York. Lindseth, A., Norberg, A., 2004. A phenomenological hermeneutical method for researching lived experience. Scandinavian Journal of Caring Sciences 18 (2), 145–157. Mcilfatrick, S., Sullivan, K., McKenna, H., 2006. What about the carers: exploring the experience of caregivers in a chemotherapy day hospital setting. European Journal of Oncology Nursing 10, 294–303. Mallinger, J., Griggs, J., Shields, C., 2005. Patient-centred care and breast cancer survivors’ satisfaction with information. Patient Education and Counselling 57, 342–349.
Mystadikou, K., Parpa, E., Tsilika, E., 2004. Cancer information disclosure in different cultural contexts. Supportive Care in Cancer 12, 147–154. Nielsen, P.A., 1992. Quality of care: discovering a modified practice theory. Journal of Nursing Care Quality 6 (2), 63–76. Norberg, A., Axelsson, K., Haggstrom, T., 1994. The experience of living with stroke sequele illuminated by means of stories and metaphors. Qualitative Health Research 4, 321–337. Normand, C., Douglas, H.R., Castelnuovo, E., 2002. Quality in nursing care: context, complexity and the role of professions. NT Research 5 (6), 407–415. Oermann, M.H., 1999. Consumers’ descriptions of quality health care. Journal of Nursing Care Quality 14, 47–55. Oermann, M.H., Lambert, J., Templin, T., 2000. Patients’ perceptions of quality health care. MCN 25, 242–247. Pargament, K., 1997. The Psychology of Religion and Coping: Theory, Research and Practice. The Guilford Press, New York, p 39. Radwin, L., 2000. Oncology patients’ perceptions of quality nursing care. Research in Nursing and Health 23, 179–190. Radwin, L., Farquhar, S., Knowles, M., Virchick, B., 2005. Cancer patients’ descriptions of their nursing care. Journal of Advanced Nursing 50 (2), 162–169. Redfern, S., Norman, I., 1990. Measuring the quality of nursing care: a consideration of different approaches. Journal of Advanced Nursing 15 (11), 1260–1271. Reed, P.G., 1992. An emerging paradigm for the investigation of spirituality in nursing. Research in Nursing and Health 15, 349–357. Ricoeur, P., 1976. Interpretation Theory: Discourse and the Surplus of Meaning. Texas Christian University Press, Fort Worth, TX. Ricoeur, P., 1991. From Text to Action – Essays in Hermeneutics II. The Athlone Press, London. Rycroft-Malone, J., Seers, K., Titchen, A., Harvey, G., Kitson, A., McCormack, B., 2004a. What counts as evidence in evidence-based practice? Journal of Advanced Nursing 47 (1), 81–90. Rycroft-Malone, J., Harvey, G., Seers, K., Kitson, A., McCormack, B., Titchen, A., 2004b. An exploration of the factors that influence the implementation of evidence into practice. Journal of Clinical Nursing 13, 913–924. Sayers, S.L., White, T., Zubritsky, C., Oslin, D.W., 2006. Family involvement in the care of healthy medical outpatients. Family Practice 23 (3), 317–324. Sainio, C., Lauri, S., Eriksson, E., 2001. Cancer patients’ views and experiences of participation in care and decision-making. Nursing Ethics 8, 97–113. Smith, C., 2000. The role of health professionals in informing cancer patients: findings from the teamwork project. Health Expectations 3, 217–219. Soderberg, A., Norberg, A., 1993. Intensive care: situations of ethical difficulty. Journal of Advanced Nursing 12, 2008–2014. Soderstrom, K.E., Martinson, I.M., 1987. Patients’ spiritual coping strategies: a study of nurse and patient perspectives. Oncology Nursing Forum 14, 41–46. Sowden, A.J., Forbes, C., Entwistle, V., Watt, I., 2001. Informing, communicating and sharing decisions with people who have cancer. Quality in Health Care 10 (3), 193–196. Tamburini, M., Gangeri, L., Brunelli, C., Boeri, P., Borreani, C., Bosisio, M., Karmann, C.F., Greco, M., Miccinesi, G., Murru, L., Trimigno, P., 2003. Cancer patients’ needs during hospitalisation: a quantitative and qualitative study. BMC Cancer 3, 12–22. Taylor, E.J., Mamier, I., 2005. Spiritual care nursing: what cancer patients and family caregivers want. Journal of Advanced Nursing 49 (3), 260–267. Taylor, E.J., 2003. Prayer’s clinical issues and implications. Holistic Nursing Practice 17, 179–188. Williams, A.M., 1998. The delivery of quality nursing care: a grounded theory study of the nurse’s perspectives. Journal of Advanced Nursing 27, 808–816. Van Maanen, H.M., 1981. Improvement in quality of nursing care: a goal to challenge in the eighties. Journal of Advanced Nursing 6, 3–9.
Contents lists available at ScienceDirect
European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon
Listening to the voices of patients with cancer, their advocates and their nurses: A hermeneutic-phenomenological study of quality nursing care Andreas Charalambousa, *, (I)Rena Papadopoulosb, Alan Beadsmoore c a
Transcultural Centre of Middlesex University, Cyprus Technology University, Cyprus Research Centre for Transcultural Studies in Health, School Ethics Committee, UK c The Centre for Excellence in Professional Learning from the Workplace, University of Westminster, UK b
a b s t r a c t Keywords: Quality nursing care Patients with cancer Hermeneutic-phenomenology Ricoeur Interpretation theory
This article presents the findings from a hermeneutic-phenomenological study looking at the meanings of ‘‘quality nursing care’’ through the experiences of patients with cancer, their advocates and their nurses. Twenty-five patients were interviewed from which fifteen also participated in two focus groups. Six patients’ advocates participated in a focus group and twenty nurses were individually interviewed. The informants came from the three major hospitals in Cyprus which provide in-patient cancer care. Patients’ advocates came from the two major cancer associations in Cyprus. Having analysed the data, seven major themes were identified: receiving care in easily accessible cancer care services, being cared for by nurses who effectively communicate with them and their families and provide emotional support, being empowered by nurses through information giving, being cared for by clinically competent nurses, nurses addressing their religious and spiritual needs, being cared for in a nursing environment which promotes shared decision-making, and patients being with and involving the family in the care. These findings stress the need to integrate these aspects in the care of patients with cancer. In doing so, nurses will need support and adequate training in order to acquire the relevant skills towards better caring for the patients. Ó 2008 Elsevier Ltd. All rights reserved.
Introduction This article is based on a study aiming to disclose the meaning of quality nursing care for patients with cancer, patients’ advocates and their nurses. Quality nursing care is a complex phenomenon and the people involved in the care receiving–caregiving process influence its meaning. The present study attempts to draw attention to the phenomenon by illuminating the meaning of quality nursing care as it is disclosed in patients’ with cancer, patients’ advocates and nurses’ narratives. Cancer remains a major cause of morbidity and mortality within Cyprus affecting one in four of the population (Cyprus Statistical Services, 2005). Alongside the nature of cancer has changed dramatically in recent years, including shorter in-patients’ stays, an increasing older cancer population and significant improvements in treatments, outcomes and effectiveness. Despite the recent changes to service delivery, little attention in terms of the quality of health services has yet been focused on patients with cancer and nurses. In light of these factors, the need to focus the exploration of the experience on those involved in the delivery and receipt of the
* Corresponding author. Tel.: þ357 99693478/25634849. E-mail address: [email protected] (A. Charalambous). 1462-3889/$ – see front matter Ó 2008 Elsevier Ltd. All rights reserved. doi:10.1016/j.ejon.2008.05.008
care and its potential value to nursing practice within the cancer care setting is important. Hogston (1995) asserts that nursing has struggled since the 1960s to capture its meaning and emphasised that it has many constituents which include ability, performance, competence, clinical judgment, knowledge, skills and accountable behaviour. Quality has been termed as a ‘‘nebulous concept’’ (Van Maanen, 1981) because it lacks constant definition in the literature (Redfern and Norman, 1990) and because terms such as quality assurance, standards of care and quality control are often used interchangeably (Nielsen, 1992). Lang (1976) defined quality in nursing care as a ‘‘process’’ which seeks to attain the highest degree of excellence in the delivery of patient care. Harvey (1996) attempted to classify the development of quality in health care by drawing on experiences within the industrial quality movement. Quality nursing care as proposed by Kunaviktikul et al. (2001: p. 782) took into consideration the perspectives of nurse administrators, staff nurses and patients and found that ‘‘quality nursing care is nursing’s response to the physical, psychological, emotional, social and spiritual needs of the patients provided in a caring manner, so that the patients are cured, healthy, to live normal lives’’. Similarly Williams (1998: p. 811) described quality nursing care as ‘‘meeting all the needs of the patients or clients you are looking after whilst low quality nursing
A. Charalambous et al. / European Journal of Oncology Nursing 12 (2008) 436–442
care was related to the omission of nursing care required to meet patients’ needs’’. According to Oermann (1999) patients’ define quality nursing care as having nurses who were concerned about them and demonstrated caring behaviours, were competent and skilled, communicated effectively with them and taught them about their care. Redfern and Norman (1990) define quality as totality of features and characteristics of a product or a service which bears on its ability to satisfy a given need. Furthermore, Redfern and Norman (1990: p. 1262) assert that quality of nursing care must also incorporate considerations of equity (care being fairly distributed), accessibility (being available and not unduly restricted by time or distance), acceptability (provided in such a way as to satisfy reasonable expectations of patients, providers and the public), efficiency (resources not being wasted on one person to the detriment of another), effectiveness (achieving the intended benefit for the individual and the community) and, perhaps most important, appropriateness (meeting the actual needs of individuals, families and communities). Any attempt to improve the quality of nursing care must begin with a definition of the term ‘‘quality nursing care’’. Different definitions for ‘‘quality of nursing care’’ have been introduced in the public sector, the private sector (Normand et al., 2002) and more recently by patients themselves (Radwin, 2000). This view is strengthened by Gunther and Alligood (2002) who comment that all in health care approach the definition of quality from a different perspective: society judges utilitarian benefits, payers the economic outcomes, patients the personalised attention received, and providers the congruity with professional worldviews and standards. The literature review revealed the absence of studies investigating this issue under the specific cultural background of health care in Cyprus. Therefore, in order to deepen the understanding of the concept ‘‘quality nursing care’’, it seems important to study patients’, advocates’ and nurses’ lived experiences of receiving and providing quality nursing care. Aim of the study The aim of the study was to investigate the views of patients with cancer and to explore their experiences in relation to quality of nursing care in the Cyprus National Health and Insurance Scheme (private and public). In the light of the patients’ views, the views of the nurses providing services to these patients, and the views of key advocates from the cancer associations were explored. Methods Study design, samples and settings The hermeneutic-phenomenological method The decision to choose the hermeneutic-phenomenological ideas of Ricoeur was mainly based on four aspects. Firstly, Ricoeur’s theory of interpretation avoids the Cartesian subject/object split, thereby making it useful for the researcher seeking to explicate intersubjective knowledge (Charalambous et al., in press). This aligned with our aim to seek to explore the issue of quality of cancer care holistically, focusing both on the experiences related to the body and mind of the patients and nurses. Secondly, Ricoeur (1976, p. 66) asserts that ‘interpretation is the hinge between language and lived experience’. This is especially so with research interviews (i.e. narratives) and focus groups where lived experience is expressed through language then transcribed into a text and interpreted. Thirdly, Ricoeur’s hermeneutic approach takes into consideration the values, beliefs, and culture (i.e. historicity as Ricoeur calls it) of the specific context of the participants (and of the researcher) which are essential elements that need to be explored
437
during the data collection and interpretation processes (Charalambous et al., in press). Finally, Ricoeur rejected the idea of bracketing allowing to the researcher to adopt a more active role in the interpretation process bringing into the study his/her experiences. Therefore, rather than suspending our preconceptions in this study, we were active participants in the interpretive process and not mere passive recipients of knowledge. This study employs a phenomenological-hermeneutic approach as this was inspired by Ricoeur (1976, 1991) and modified by Lindseth and Norberg (2004). Using this phenomenologicalhermeneutic method, the researcher attempts to uncover the significance of experienced feelings and thoughts behind the patients’ stories (Howritz et al., 2002). It is not of primary importance exactly what the patient chose to express, but rather the most likely content of the text. In other words, the task is not only to understand how the interviewed patients experience their situation, but also to help the interviewer understand and interpret the situation of each patient. The texts are processed in order to capture the significance of the statements in the interviews (Norberg et al., 1994). The method of interpretation proceeds through three phases, which constitute a dialectical movement between the whole and the parts of the text (hermeneutic circle) and between understanding and explanation. The interpretation process takes its point of departure in Ricoeur’s theory of interpretation and that the first phases are the naı¨ve reading/interpretation followed by the structural analysis. In the final phase the text is again read as a whole, the naı¨ve understanding and the themes are reflected on in relation to the literature and a comprehensive understanding is formulated. During the naı¨ve reading phase, the researcher does not perform any kind of analysis but on the contrary he acquires a first naı¨ve guess of the meaning of the text within its context. The text is read several times and the surface understanding achieved provides direction for the next phase, that of structural analysis. In the structural analysis, the connections and pattern of the text are uncovered by dividing the text into meaning units, condensed meaning units, sub themes and themes (Howritz et al., 2002) and validate/invalidate the understanding gained from the naı¨ve understanding. In the final interpretative phase, the text is reviewed as a whole with the naı¨ve reading and structure analysis taken into consideration. The study took place in the period of 2006–2007, at the three major hospitals in Cyprus which provide in-patient cancer care, the Limassol General Hospital, the Bank of Cyprus Oncology Centre and the Nicosia General Hospital. The empirical phase involved a series of narratives with 25 patients with cancer, with 20 cancer nurses, two focus groups with the patients and a focus group with 6 key advocates from the cancer associations. All the data were collected by the primary researcher at the privacy of the patients’ rooms, the ward managers’ office and the cancer associations meeting room. The samples’ size was decided based on the concept of ‘‘saturation’’ or the point at which no new information or themes are observed in the data. Patients were purposively selected from the patients’ ward list primarily based on their ability and their willingness to participate. Furthermore, certain selection criteria were set: participants were adult patients (ranged in age from 21 to 68 years) with cancer (lung, liver, prostate, breast, stomach, intestine) of both sexes and whose health had required hospitalised treatment. The exclusion criteria included patients that required treatment in protective isolation, newly diagnosed and terminally ill patients. Eligible nurse participants were from both sexes and all levels of nursing staff with at least one-year experience in cancer care departments. Finally, the key advocates were members of management committees and policy makers of the cancer associations with wide experience in issues related to cancer nursing and palliative care. Once, participants were selected, they were fully
438
A. Charalambous et al. / European Journal of Oncology Nursing 12 (2008) 436–442
informed in relation to the study and what was expected of them. A written consent was retrieved in order to participate.
themes to the meaning of quality nursing care. Their opinions were grouped into the following themes based on the analysis process:
Ethical permission The informants were guaranteed anonymity in the reporting of all results and were assured that the data would not be shared with anyone except the researchers. The informants were also informed of their right to withdraw their consent to participate at any time without repercussions. The study was reviewed and approved by the ethics committee of the Middlesex University – Health Studies Ethics Sub-Committee (HSESC) and the Cyprus Ministry of Health.
Being treated for cancer in easily accessible services. Being cared for by nurses who provide emotional support and effectively communicating with them and their families. Being given health-related information by nurses. Being cared for by nurses with clinical competencies. Having their religious and spiritual needs met by the nurse. Being cared for by nurses who promote shared decisionmaking. Promoting family presence and involvement in the care.
Data collection The narrative approach is suggested by Ricoeur for exploring the lived experiences of people. Certain stem questions were held in mind in the narratives which emerged from the literature review and the review of the Cypriot NHIS (National Health and Insurance Scheme). These were broad open-ended questions used to encourage narration rather than to elicit specific information. The interviewer asked the informants ‘‘What does the term ‘‘quality nursing care’’ means to you?’’ They were also asked: ‘‘please narrate your experiences of quality nursing care being provided to you’’. The narratives were tape-recorded and transcribed verbatim, including the silences, laughter and crying. The narratives were performed in the participants’ native language which was Greek. Six narratives were translated in English and then back-translated in Greek by the researchers in order to assure conceptual equivalence. Translation and back-translation were performed simultaneously, adopting therefore a parallel blind technique. Data analysis The interpretation of the data proceeded through three phases based on Ricoeur’s interpretation theory. During the first phase, the researcher reads the text as a whole to become familiar with the text and begins to formulate thoughts about its meaning for further analysis. The naı¨ve interpretation is a preliminary interpretation of the whole. Structural analysis follows as the second step and involves identifying patterns of meaningful connection. This step is often referred to as an interpretive reading. Structural analysis is employed to discard or validate these first guesses at meanings according to Soderberg and Norberg (1993). There are several kinds of structural analysis such as thematic analysis, search for narrative structures, and search for deep structures in the form of metaphors. For the purpose of this study, thematic structural analysis was used, i.e. a way of seeking to identify and formulate themes. Thirdly, a comprehensive understanding is formulated, a more sophisticated mode of understanding emanating from and supported by the first two phases (Ricoeur, 1976: p. 74). During this phase the interpretation of the whole follows and involves reflecting on the initial reading along with the interpretive reading to ensure a comprehensive understanding of the findings. In formulation of the comprehensive understanding, the meanings in the text have evolved in a critical dialectic between the reader’s preunderstanding and parts and the whole of the text, and this understanding is re-contextualised in light of relevant literature to deepen and widen the understanding of the text (Ricoeur, 1976; Lindseth and Norberg, 2004). Findings and discussion Patients and the key advocates have expressed similar views when they were asked to comment on the meanings of the term ‘‘quality nursing care’’. With the exception of the first main theme which raised controversy among patients, advocates and the nurses there was a consensus as to the contribution of the rest of the
Being treated for cancer in easily accessible services One understanding of the meaning of quality nursing care, as disclosed through patients’ and advocates’ narratives, is that quality nursing care is closely related to issues such as availability and (fair) access to cancer services. ‘‘How can you speak of quality nursing if the service is not available or easy to get? I am not from this town and I have to travel for two hours to get treated’’ (M-68, PI-15) ‘‘It is rarely a simple task to get treated for cancer [.] accessing the services can be a burdening experience both for the patient and the family’’ (FG with PA). Accessing cancer care services in Cyprus is according to informants problematic for specific groups such as people living in remote areas (rural), with low incomes, pensioners, elderly, people with physical disability and lone people. Poor patient access to cancer services reaches its peak when there is a combination of these categories. For example it was found that lone elderly patients appeared to face many problems in accessing cancer services. Elderly patients (men and women) with no access to a car considered, travelling to get treated as a burdensome experience but with financial burden as well. Contrary, for younger patients travelling was not reported as a problem because these patients appeared to have an access to a car. Informants assert that the problems of availability and access create inconvenience not only for the patients but for their families as well. The nurses in their majority disagreed with the view expressed by the patients and their advocates in relation to the meaning of quality nursing care which is perceived as availability and access to care. ‘‘Nursing care is nursing care and its quality begins as soon as the patient is admitted in the ward and the nurse begins to care for the patient [.] I can hardly see the connection between the two [meaning quality nursing care and access]’’ (M-31, SNI-6). There appears to be an oxymoron here. While nurses advocate in their narratives for a ‘‘holistic’’ care they have this isolated notion of nursing which fails to take into consideration issues such as access to care. However, the literature suggests that access and availability are more general issues which are related to the quality of the care as suggested by Oermann (1999) and which can also negatively or positively influence the quality of the provided nursing care. She concluded that it is difficult to view quality in isolation, something that the nurses in this study have implied. Being cared for by nurses who provide emotional support and effectively communicating with them and their families It is evident in the narratives that informants consider communication between nurses and patients and their families as an important aspect of the care which recurrently has been related to quality nursing care. ‘‘Quality nursing care includes many different things but for me being able to communicate with my carers is perhaps the most important. Otherwise is like being treated by ‘‘mute’’ carers’’ (F-57, P-1). The magnitude of its importance has been raised by the advocates who claimed that quality nursing care can only be
A. Charalambous et al. / European Journal of Oncology Nursing 12 (2008) 436–442
achieved through good communication between nurse and patient. ‘‘Without this essential component [.] nursing care cannot be complete or of high quality’’ (FG with PA). Informants’ conceptualisation of the term ‘‘communication’’ was obtained through the narratives. They held a wider understanding of the concept which extended beyond the simple provision of information to conveying of emotions, thoughts and worries, valuing therefore a therapeutic form of communication. Informants expressed the opinion that there are problems when communicating with the nurses coinciding therefore with Sowden et al. (2001) who assert that most common complaints made by patients with cancer are about poor communication and inadequate information. Generalisations, however, should be avoided since with some nurses such good communication exists emphasising on the ability of the nurses to communicate emotional messages to and from patients. Therefore in spite of the importance that informants placed on communication they believe that in clinical practice it remains persistently one-sided and hermetic, making it difficult to being informed about their health and being comforted to express their unvoiced needs, worries, and feelings. A major problem that patients reported on in our study was the fact that many nurses in the process of communicating information to the patients failed to tailor this information to suit patient’s educational background and his/her general level of comprehension. Earlier, Harris (1998) concluded to the same findings with additional emphasis on the patients’ cultural orientation in those cases that the patients came from different cultural backgrounds. Finally, a Scottish randomised control trial has also shown that patients with cancer prefer information based on their own medical records to general information (Jones et al., 1999). Being given health-related information by nurses While the informants related the provision of quality nursing care with adequate informing of the patient on his/her healthrelated issues they asserted that generally they did not receive enough information during hospitalisation. ‘‘Quality nursing care is partly to keep us informed and it’s the nurses’ job for doing so’’ (F-58, PI-11, FG-1). Few patients asserted that the information they received were sometimes vague and misleading failing to give an objective picture of their health status and how serious their problems really were. ‘‘The staff [nurses and physicians] does not take you into their confidence and hardly give you any meaningful information or when they give it to you, you are lucky if you understand a few words’’ (F-21, PI-6, FG-2). ‘‘Quality is achieved when the patient is informed [.] an informed patient is more likely to share decisions responsibilities and also be an active participant in his/her own care’’ (FG with PA). This is grounded in the beliefs held by the nurses and other health care professionals that patients are incapable of handling disease related information provided to them. ‘‘Providing adequate information to patients can be psychologically harmful for them. What you do not know will not heart you [.] many of these patients simply cannot handle this kind of information’’ (F-31, SNI-7). A wide body of literature supports the views expressed by the patients that health care professionals might underestimate their desire for and ability to cope with health-related information. This assumption might lead to the provision of limited information to patients with cancer and their families (Coulter et al. 1999; Smith 2000; Sowden et al. 2001; Tamburini et al. 2003). Many were the patients that related the provision of information with the presence or absence of good communication with the nurses. Indirectly a patient expressed the opinion that patients seem to communicate better with the nurses rather than the physicians. When this issue was raised in the focus groups there was an agreement among the patients that this was indeed a fact. In order to justify their opinion the informants claimed that ‘‘the physician is around only for a few
439
minutes during the day and almost never at night’’ (FG-1), ‘‘the physician during the round in the morning rarely answers to our questions, because we have so many and there is so little time to ask them, therefore is necessary to ask the first question (or problem) that troubles us at the moment, thank God we have the nurses to fill in the gaps [.]’’ (FG-2). As nursing practice is moving away from paternalism, patients are becoming increasingly more involved in decision-making through the provision of information, and there is evidence to suggest that this involvement promotes patient satisfaction. Effective communication of information is an essential prerequisite for enabling patients to make informed decisions about their care. Patients rely on the information relayed to them by health care professionals and it is possible that providing patients with adequate information not only permits informed decision-making but also improves coping and leads to better psychological health (Mallinger et al., 2005). Being cared for by nurses with clinical competencies Informants expressed the view that for the provision of quality nursing care, it is necessary that the patients are cared for by clinically competent nurses. ‘‘Clinical competency is essential for quality nursing care and should not only be about the qualities that you have but it should also be about the ability to collaborate and coordinate the team in the best interest of the patient’’ (M-55, WMI17). Radwin (2000) in a qualitative study with 22 oncology patients aimed at analysing theoretically their perceptions of the attributes and outcomes of quality nursing care. Eight attributes of quality nursing care emerged from the data. One of these attributes was professional knowledge. As the researcher asserts in the analyses two aspects of professional knowledge were identified: experiential knowledge and technical competence which referred to the importance of skills. Patients and advocates in this study similarly supported the perspective that quality of nursing care means being cared for by clinically competent and knowledgeable nurses. A study by Radwin et al. (2005) investigated patients’ with cancer descriptions of nurses and nursing care. A total of 461 patients answered the question ‘‘In general, how do you feel about the nurse and nursing care’’. Radwin et al. (2005) assert that a typology of four concepts reflecting patients’ descriptions of their nursing care emerged from the data. These concepts were laudable, caring, professional and outcomes. The findings of this study support a number of categories included in the first three concepts. The concept of ‘‘laudable’’ included the category ‘‘approachable’’ an aspect of the nurse’s qualities that patients with cancer highlighted as been part of the clinically competent nurse by stating that the nurses are ‘‘being there’’ (F-21, PI-6, FG-2). Through a trusting relationship patients feel comfortable to open up to their nurses and speak with them ‘‘not only about treatments, diseases but more personally’’ (F-42, PI-16, FG-1), an aspect that was identified by Radwin et al. (2005) as ‘‘personable’’. Within the concept of ‘‘caring’’ were data placed in categories labelled supportive, concerned helpful, sensitive, comforting and empathetic. The findings of our study supported some of these categories. The patients stressed the importance of the nurse being supportive, understanding, comforting, and helpful. In relation to the category ‘‘helpful’’ a patient said ‘‘She would do anything she can, so my concerns would be heard and even met’’. Another patient commented that ‘‘[the competent nurse] is making us feel emotionally comfortable’’, whilst a patient referring to the support she experienced by the nurse caring for her said that ‘‘[.] I had to do a dangerous procedure.the nurses were so well-informed and understanding.They felt for me’’ (F-21, PI-6, FG-2). The concept labelled ‘‘professional’’ was defined as holding the standards expected of a nurse in knowledge skills and demeanour. The
440
A. Charalambous et al. / European Journal of Oncology Nursing 12 (2008) 436–442
concept included data placed in categories labelled knowledgeable, responsible, coordinated, dedicated and demeanour (Radwin et al. 2005). These findings coincided with the attributes that patients held on what constitutes a clinically competent nurse expressed in our study. Informants expressed the same view as to what a ‘‘competent nurse’’ is; they commented that is the one that ‘‘knew what she was doing’’ (F-21, PI-6, FG-2). Informants also supported the view that competent nurses are a prerequisite for delivering quality nursing care, asserting that ‘‘[competent nurses] are the key to quality nursing care’’ (FG with PA). Finally, the informants stressed the importance of skills for any competent nurse. Data falling in this category were labelled as ‘‘technical competence’’ a term used by Radwin (2000). Having their religious and spiritual needs met by the nurse Informants in this study agreed that the meaning of quality nursing care relates to having the patients’ spiritual and religious needs being met by the nurses. ‘‘I am expecting the nurse to provide the means to get this kind [religious and spiritual] of care in here’’ (F-68, PI-21, FG-1). ‘‘Praying, reading the Holy Bible took my mind off the constant thought of death [.] through the nurse’s caring I saw what the true meaning of life is’’ (F-68, PI-25, FG-2). In the literature the terms ‘‘spirituality’’ and ‘‘religion’’ have suffered from a multiplicity of definitions often causing a level of confusion. For the purpose of this study religion is communal, particular and defined by boundaries. It is spirituality incarnated at the social and cultural level. Religion takes the boundless and binds it into the limitations of language and culture, even as it may also transform culture (Pargament, 1997). Spirituality was defined by Reed (1992) as the part of being human that seeks meaningfulness through intra-, inter-, and trans-personal connection. These definitions coincide with the way the informants viewed their spiritual and religious care in this study and the fact that the terms ‘‘religious’’ and ‘‘spirituality’’ were used interchangeably. Comparing the results of this study with the results of other studies it was shown that some patients expected nurses to support their spiritual and religious needs while nurses focused on helping the patients with their spiritual needs. Patients with a religious background in this study suggested that their religious needs should be addressed and most importantly respected by the nurse as part of the care and support provided to the patient to gratify his/her spiritual quest. The informants in the narratives identified religious and spiritual needs for which while they expected the priest to meet they also valued the nurses’ contribution even though it was significantly less than that of the priests. Informants emphasised on the importance of these needs being met by the nurses as part of a holistic approach to care. ‘‘Quality nursing care needs to be holistic care [.] every need that the patient has needs to be addressed whether this is spiritual, physical, or religious’’ (FG with PA). However, Taylor and Mamier (2005) assert that there is scanty empirical basis to support this conclusion. Taylor (2003) in a small-scale research study with 28 patients and family members living with cancer found mixed results with only a small percentage expecting nurses to provide spiritual care. However, a percentage of patients were enthusiastic about receiving it. On the same topic two older studies concluded that patients with cancer did not consider nurses as primary spiritual care providers. The same studies suggested that patients preferred their spirituality been addressed by family members, chaplains and clergy (Soderstrom and Martinson 1987; Highfield 1992).
the decision-making process can enhance the quality of the provided nursing care. ‘‘Quality nursing care relates to the patient increased involvement in his care. This may be shared decision-making or other strategies to increase their participation’’ (F-35, SNI-9). Shared decision-making, in which patients and health professionals join in both the process of decision-making and ownership of the decision made, is attracting considerable interest as a means by which patients’ preferences can be incorporated into clinical decisions (Coulter et al. 1999). Sowden et al. (2001) assert that the shared decision model is not only desired by patients and is also being advocated as a way of promoting clinical effectiveness and more appropriate use of resources. The patients and their advocates expressed the belief that nursing care and specifically its quality is influenced by the ability patients have to participate in their own health care decisions. They believe that only through the provision of opportunities to participate and the provision of choices, empowerment can be achieved. The fact that the patients expected the nurses (and physicians) to give them the power in participating in shared decision-making processes coincides with the literature which supports that a patient must be an active informant in his/ her empowerment, indicating that nurses can facilitate and support patient’s empowerment (Laverack, 2005). The active role that the patient should be engaged to has been stressed by Kuokkanen and Leino-Kilpi (2000) who assert that empowerment is an individual process in which the person is interacting with the environment pursuing impact on his/her life. The major responsibility to invite patients as active partners in decision-making in nursing is inevitably the nurses’ since the patient is in a subordinate position and cannot be expected to take the lead. Patients’ experiences in relation to health issues should be valued as evidence contributing to the decision-making process and that partnership with health care professionals is important (Rycroft-Malone et al., 2004a). Contrary to this prerequisite of shared decision-making, informants in my study repeatedly stressed that their experiences and knowledge in relation to health issues have not been valued by the nurses, nor have been used to promote participation instead patients were often treaded with contempt. ‘‘I told her that for me this medication is not effective and asked her the reason for giving me a different one [.] I was disappointed because she ignored me’’ (F-58, PI-23). The idea of God like power of the physicians which extents to include the nurses might serve as an explanation to some of the behaviours demonstrated by the nurses. In clinical practice nurses often use the physician’s instructions to strengthen their position in their relationship with the patients. ‘‘She said to me ‘because this one is better for you’ and the physician prescribed this one’’ (F-58, PI-23). Therefore it appears that a prerequisite for decision-making is the relationships between patients and health care professionals. ‘‘The key for shared decision-making lies in the relationship between the nurse and the patient’’ (FG with PA). Particularly, it appears that the issue is the balance of power and control. Instead of having a paternalistic approach to the patient and professional carer relationships, it is more facilitating to shared decision-making if the relationship is open and equal so that patients have the opportunity to express desires, concerns, information needs and willingness and opportunities to participate in their care (Sainio et al., 2001; Buchanan et al., 1996). Further, there is a need for a context receptive for change, addressing power and authority processes, and with appropriate and transparent decision-making processes (Rycroft-Malone et al., 2004b). Promoting family presence and involvement in the care
Being cared for by nurses who promote shared decision-making According to the literature patient participation in decisionmaking has produced many debates among health care professionals. However, it seems that it is accepted that participation in
Since this is hermeneutic-phenomenological study, I considered it important to clarify what the informants referred to when they used the term ‘‘family’’. While the term family has usually been defined as an individual of blood relationship (Ferrell, 1998), it is
A. Charalambous et al. / European Journal of Oncology Nursing 12 (2008) 436–442
suggested that a broader definition is more appropriate and is best defined as those individuals considered as family by the patient. Therefore, the term family for this study included those individuals of blood relationship, friends, and significant others that the patients considered as family. The study’s findings suggest that quality nursing care is being understood by the informants as being with and involving the family in the care. ‘‘Being there for me [family] is the most important thing that gives me courage, and hope for the more difficult times to come and overcoming these’’ (F-30, PI12). ‘‘I see the role of the family as complimentary to that of the nurse for giving us quality nursing care’’ (F-44, PI-13, FG-2). These findings coincide with the belief that patients’ illness experiences cannot be understood as individualised, socially isolated phenomena (Mcilfatrick et al., 2006; Mystadikou et al., 2004). As cancer is also affecting the family rather than just the patient, the family may choose to assume a more active role in their loved ones care; that is in the hospital or at home. ‘‘When the patient becomes ill so is his/her family and the nurse needs to take this aspect into consideration when caring for the patient [.] the family can reassure the patient, convey information, offer emotional support and therefore be a valuable tool for providing quality nursing care’’ (FG with PA). Despite evidence that these supportive relationships can increase adherence to treatment and improve medical outcomes Sayers et al. (2006) assert that the impact of close relationships are likely dependent on the degree to which the patient perceives a need for family involvement. The results of this study highlighted that the patients and advocates recognised the contribution of their family in making decisions related to their care. Family members were the link between the patient and the nurse when information was provided to the patient. Their mediation assured that the information would be in a language understood by the patient and based on this the necessary decisions could be made. Furthermore, informants expressed the belief that the closeness with their family and its involvement in the care had benefits which primarily took the form of physical and emotional support (coping mechanism). Methodological reflections In the hermeneutic-phenomenological method developed by Lindseth and Norberg (2004) there are inherent components for ensuring quality. The comprehensive understanding of the present study in only one of the many possible interpretations (Ricoeur, 1976) and the interpretation presented in the one the researchers found most meaningful and more probable to be true. The decision as to which interpretations are the most (or more) probable derived through the informants’ perspectives discourse, round table discussions with the study’s researchers, and the feedback received through several conference presentations of the findings. The results of this study cannot be generalised if one employs a statistical definition of generalisability dependent on sample size and representativity. However, if generalisability is understood as being on a theoretical and conceptual level, the understanding gained from this study may be transferable to people in contexts beyond those that were studied. Hopefully, the findings can convey understandings and descriptions enabling readers to see their own situation in a new, and expanded, way. When it comes to hermeneutic-phenomenology, Ricoeur (1976: p. 78) states that it is always possible to argue either for or against an interpretation, and the credibility of an interpretation lies closer to the logic of probability than to the logic of empirical verification. Credibility is argumentative and is established in a discourse. The findings of a study achieve credibility when other researchers come to regard them as sufficiently trustworthy to rely on in their own work (Kvale, 1996: p. 245). The integrity of this work stemmed from the process of coding and categorising the data, with links made explicit and concepts defined. The fundamental point to be grasped in
441
evaluating hermeneutic accounts is that there is no such thing as an interpretation-free, objectively ‘‘true’’ account of ‘‘things in themselves’’, and that there is no technical procedure for ‘‘validating’’ that an account corresponds to this timeless, objective ‘‘truth’’ (Benner, 1994). Implications for nursing practice and contribution to knowledge The findings of this study suggest that, similarly to previous research, the term ‘‘quality nursing care’’ is a complex and multidimensional concept which can mean different things to patients and nurses (Oermann, 1999; Oermann et al., 2000; Normand et al., 2002; Radwin, 2000). This study, however, has highlighted the common aspects that patients, their advocates, and nurses share in relation to their understanding of the concept ‘‘quality nursing care’’. These common aspects can be combined together to form a consensus term of what constitutes quality nursing care adopting a different perspective from what has been suggested by researchers and scholars so far. Therefore, quality nursing care can be interpreted ‘‘as easily accessible care delivered by clinically competent nurses and supported by the family which considers the patient’s need for spiritual, religious care, communication, emotional support and information giving. Nurses often try to be professional, focusing on the main picture and trying to analyze everything on the basis of scientific explanations and interpretations such as the concept of quality nursing care; however, it was seen from this study that it is often the little and simple things that count to and appreciated by the patient. It is seemingly simple acts, such as being there, holding a patient’s hand and listening, that bring such profound changes in comfort when one is ill. The study also stressed those factors that nurses need to include in the care of the patients such as promoting their participation in the decision-making process, promoting family’s involvement in the care, better communication with the patients and family, and the provision of holistic care emphasising the increased need for spiritual and religious care. However, these aspects of the care raised by the participants also need to be considered by policy makers in Cyprus, so that nurses are empowered when practicing nursing in the clinical settings. This empowerment needs to take the shape of better preparation of the nurses who care for patients with cancer in relation to developing communication skills, training in relation to spiritual care, having the ability to fully inform the patient on aspect of his/her care, and attaining the skills to promote patient and family involvement in the care. Because this research is the first hermeneutic-phenomenological study conducted with Cypriot patients with cancer receiving cancer care, its findings have a distinctive significance for the research endeavour in the area of cancer care. It is imperative to stress that one single study, irrespective of its qualitative or quantitative design, cannot investigate any phenomenon to its full extent. The themes highlighted in this study offer opportunities for additional qualitative and quantitative research in the field of cancer care. The findings must be supplemented by further specific studies, such as exploring the meanings that spiritual needs have for patients with cancer. Researchers have so far focused on the issue of spirituality in more general terms rather than focusing on patients with cancer. Nursing research which focused on the meanings of the spiritual needs for patients with cancer would therefore be a valuable addition to the literature. Furthermore, it would be possible to explore the perspectives of family members that take upon the role of the informal caregiver in relation to ‘‘quality nursing care’’ and assuming a more active role in the care. This study has shown that family plays an important role when it comes to the care of patients with cancer and it would be beneficial to investigate the burden that the role of the informal caregiver has.
442
A. Charalambous et al. / European Journal of Oncology Nursing 12 (2008) 436–442
Conflict of interest statement This is to confirm that there weren’t any financial and personal relationships with other people or organisations that could inappropriately influence (bias) our work. References Benner, P., 1994. Interpretative phenomenology: embodiment, caring and ethics in health and illness. Sage Publications, London. Buchanan, J., Borland, R., Cosolo, W., Millership, R., Haines, I., Zimet, A., Zalcberg, J., 1996. Patients’ beliefs about cancer management. Supportive Care in Cancer 4, 110–117. Charalambous, A., Papadopoulos, R., Beadsmoore, A., 2008. Ricoeur’s hermeneutic phenomenology: an implication for nursing research. Scandinavian Journal of Caring Sciences, in press. Coulter, A., Entwistle, V., Gilbert, D., 1999. Sharing decisions with patients: is the information good enough? British Medical Journal 318 (7179), 318–322. Cyprus Statistical Services, 2005. Health Statistics. Printing Office of the Republic of Cyprus, Nicosia. Ferrell, B., 1998. The family. In: Doyle, D., Hanks, N., MacDonald, N. (Eds.), Oxford Textbook of Palliative Medicine, second ed. University Press, Oxford, pp. 355–480. Gunther, M., Alligood, M.R., 2002. A discipline-specific determination of high quality nursing care. Journal of Advanced Nursing 38 (4), 353–359. Harris, K.A., 1998. The informational needs of patients with cancer and their families. Cancer Practice 6, 39–46. Harvey, G., 1996. Quality in health care: traditions, influences and future directions. International Journal for Quality in Health Care 8 (4), 341–350. Highfield, M.F., 1992. Spiritual health of oncology patients. Nurse and patient perspectives. Cancer Nursing 15, 1–8. Hogston, R., 1995. Quality nursing care: a qualitative enquiry. Journal of Advanced Nursing 21, 116–124. Howritz, E.B., Theorell, T., Andeberg, U.M., 2002. Fibromyalgia patients’ own experiences of video-interpretation: a phenomenological-hermeneutic study. Scandinavian Journal of Caring Sciences 17, 247–264. Jones, R., Pearson, J., McGregor, S., 1999. Randomised trial of personalised computer based information for cancer patients. British Medical Journal 319, 1241–1247. Kuokkanen, L., Leino-Kilpi, H., 2000. Power and empowerment in nursing: three theoretical approaches. Journal of Advanced Nursing 31 (1), 235–241. Kunaviktikul, W., Anders, R.L., Srisuphan, W., Chontawan, R., Nuntasupawat, R., Pumarporn, O., 2001. Development of quality of nursing care in Thailand. Journal of Advanced Nursing 36 (6), 776–784. Kvale, S., 1996. Interviews: an Introduction to Qualitative Research. Sage, Thousand Oaks, CA. Lang, N.M., 1976. Issues in quality assurance in nursing. In: American Nurses Association (Ed.), Issues in Evaluation Research. ANA, Kansas City, pp. 45–46. Laverack, G., 2005. Public health: power, empowerment, and professional practice. Palgrave Macmillan, New York. Lindseth, A., Norberg, A., 2004. A phenomenological hermeneutical method for researching lived experience. Scandinavian Journal of Caring Sciences 18 (2), 145–157. Mcilfatrick, S., Sullivan, K., McKenna, H., 2006. What about the carers: exploring the experience of caregivers in a chemotherapy day hospital setting. European Journal of Oncology Nursing 10, 294–303. Mallinger, J., Griggs, J., Shields, C., 2005. Patient-centred care and breast cancer survivors’ satisfaction with information. Patient Education and Counselling 57, 342–349.
Mystadikou, K., Parpa, E., Tsilika, E., 2004. Cancer information disclosure in different cultural contexts. Supportive Care in Cancer 12, 147–154. Nielsen, P.A., 1992. Quality of care: discovering a modified practice theory. Journal of Nursing Care Quality 6 (2), 63–76. Norberg, A., Axelsson, K., Haggstrom, T., 1994. The experience of living with stroke sequele illuminated by means of stories and metaphors. Qualitative Health Research 4, 321–337. Normand, C., Douglas, H.R., Castelnuovo, E., 2002. Quality in nursing care: context, complexity and the role of professions. NT Research 5 (6), 407–415. Oermann, M.H., 1999. Consumers’ descriptions of quality health care. Journal of Nursing Care Quality 14, 47–55. Oermann, M.H., Lambert, J., Templin, T., 2000. Patients’ perceptions of quality health care. MCN 25, 242–247. Pargament, K., 1997. The Psychology of Religion and Coping: Theory, Research and Practice. The Guilford Press, New York, p 39. Radwin, L., 2000. Oncology patients’ perceptions of quality nursing care. Research in Nursing and Health 23, 179–190. Radwin, L., Farquhar, S., Knowles, M., Virchick, B., 2005. Cancer patients’ descriptions of their nursing care. Journal of Advanced Nursing 50 (2), 162–169. Redfern, S., Norman, I., 1990. Measuring the quality of nursing care: a consideration of different approaches. Journal of Advanced Nursing 15 (11), 1260–1271. Reed, P.G., 1992. An emerging paradigm for the investigation of spirituality in nursing. Research in Nursing and Health 15, 349–357. Ricoeur, P., 1976. Interpretation Theory: Discourse and the Surplus of Meaning. Texas Christian University Press, Fort Worth, TX. Ricoeur, P., 1991. From Text to Action – Essays in Hermeneutics II. The Athlone Press, London. Rycroft-Malone, J., Seers, K., Titchen, A., Harvey, G., Kitson, A., McCormack, B., 2004a. What counts as evidence in evidence-based practice? Journal of Advanced Nursing 47 (1), 81–90. Rycroft-Malone, J., Harvey, G., Seers, K., Kitson, A., McCormack, B., Titchen, A., 2004b. An exploration of the factors that influence the implementation of evidence into practice. Journal of Clinical Nursing 13, 913–924. Sayers, S.L., White, T., Zubritsky, C., Oslin, D.W., 2006. Family involvement in the care of healthy medical outpatients. Family Practice 23 (3), 317–324. Sainio, C., Lauri, S., Eriksson, E., 2001. Cancer patients’ views and experiences of participation in care and decision-making. Nursing Ethics 8, 97–113. Smith, C., 2000. The role of health professionals in informing cancer patients: findings from the teamwork project. Health Expectations 3, 217–219. Soderberg, A., Norberg, A., 1993. Intensive care: situations of ethical difficulty. Journal of Advanced Nursing 12, 2008–2014. Soderstrom, K.E., Martinson, I.M., 1987. Patients’ spiritual coping strategies: a study of nurse and patient perspectives. Oncology Nursing Forum 14, 41–46. Sowden, A.J., Forbes, C., Entwistle, V., Watt, I., 2001. Informing, communicating and sharing decisions with people who have cancer. Quality in Health Care 10 (3), 193–196. Tamburini, M., Gangeri, L., Brunelli, C., Boeri, P., Borreani, C., Bosisio, M., Karmann, C.F., Greco, M., Miccinesi, G., Murru, L., Trimigno, P., 2003. Cancer patients’ needs during hospitalisation: a quantitative and qualitative study. BMC Cancer 3, 12–22. Taylor, E.J., Mamier, I., 2005. Spiritual care nursing: what cancer patients and family caregivers want. Journal of Advanced Nursing 49 (3), 260–267. Taylor, E.J., 2003. Prayer’s clinical issues and implications. Holistic Nursing Practice 17, 179–188. Williams, A.M., 1998. The delivery of quality nursing care: a grounded theory study of the nurse’s perspectives. Journal of Advanced Nursing 27, 808–816. Van Maanen, H.M., 1981. Improvement in quality of nursing care: a goal to challenge in the eighties. Journal of Advanced Nursing 6, 3–9.