Support Care Cancer (2014) 22:1049–1058 DOI 10.1007/s00520-013-2062-6
ORIGINAL ARTICLE
Perception and fulfillment of cancer patients' nursing professional social support needs: from the health care personnel point of view Jingfang Hong & Yongxia Song & Jingjing Liu & Weili Wang & Wenru Wang
Received: 3 October 2013 / Accepted: 15 November 2013 / Published online: 28 November 2013 # Springer-Verlag Berlin Heidelberg 2013
Abstract Purpose This study aimed to (1) explore the needs of cancer patients regarding common nursing professional social support from the perspective of physicians and nurses, (2) identify what type of needs clinical nurses actually fulfill and what remains to be improved, and (3) analyze the potential reasons for the gap between the identified needs and those that are fulfilled. Methods A qualitative approach using focus group interviews was adopted to explore the perception and provision of cancer patients' needs regarding nursing professional social support. A purposive sample of 32 health care professionals was recruited from two teaching hospitals in Anhui province, China. Five focus group interviews were conducted and all interviews were tape-recorded and transcribed verbatim. A content analysis was performed with the data. Jingfang Hong and Yongxia Song are co-first authors and contributed equally to this work J. Hong (*) : Y. Song : J. Liu : W. Wang (*) School of Nursing, Anhui Medical University, No.69 Mei Shan Road, Shu Shan District, Hefei, Anhui Province, People’s Republic of China e-mail: [email protected] e-mail: [email protected] J. Hong e-mail: [email protected] Y. Song e-mail: [email protected] J. Liu e-mail: [email protected] W. Wang Alice Centre for Nursing Studies, Yong Loo Lin School of Medicine, Level 2, Clinical Research Centre, Block MD 11,10 Medical Drive, Singapore, Singapore e-mail: [email protected]
Results The healthcare professionals perceived various nursing professional support needs of cancer patients; these include informational, emotional/psychological, and technical support needs; the mobilization of social resources; and palliative care during certain stages. The findings also indicated that there are still many unmet needs, especially needs related to the mobilization of social resources and palliative care. The reasons for the deficiencies in the fulfillment of these needs varied and included both subjective and objective aspects, such as the patients' lack of awareness of how to search for professional support, a shortage of professional staff, and the lack of a culturally appropriate assessment tool. Conclusions Cancer patients' supportive care needs were not always fully provided by nurses, even when these needs were identified by healthcare professionals. Nursing professional social support needs should be assessed quickly and effectively so that the appropriate interventions can be offered to cancer patients. Keywords Professional social support . Identified needs . Actual provision . Cancer patient
Introduction Many cancer patients face difficulties in managing their daily activities, and these patients experience emotional problems and other related issues for which supportive care is extremely important. In a health care context where specialized supportive care services are often unavailable or difficult to access, supportive care largely remains the responsibility of the medical and nursing professionals [1]. Social support was defined as the social resources that a person perceives to be available or that are actually provided in the context of both formal support groups and informal helping relationships [2]. Social support is one of the main
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factors promoting the physical and psychological rehabilitation of cancer patients. Previous studies have consistently demonstrated that perceived social support is significantly related to the health-related quality of life [3], the level of hope [4], and improvements in cancer patients' behaviors related to hospitalization [5]. In addition, studies have revealed that a higher level of perceived social support significantly improved the patients' immune function [6], psychological adjustment [7], positive coping strategies, psychosomatic symptoms, and lifespan [8]. For patients with cancer, the social support system is mainly composed of three components, namely, the “family consanguinity aspect,” the “moral consanguinity aspect,” and the “medical consanguinity aspect” [9]. Among them, the first two aspects refer to the non-professional social support provided by the patient's family, friends, or social organizations. However, “medical consanguinity” is considered an important way in which healthcare professionals provide professional social support during the medical treatment period. Health care professionals must assume responsibility for providing professional supportive care due to their professional requirements. Studies have shown that supportive care provided by health care professionals could reduce the degree of disease invasion, improve the level of health consciousness of patients with chronic diseases [10], and increase the patients' trust in professionals [11]. Studies have also revealed that cancer patients believe that nurses are one of the most important sources of social support [12, 13]. Recently, the results of interviews with healthcare professionals, including oncologists, surgeons, and nursing experts, have also suggested that nurses should undertake the responsibility of identifying and managing emotional distress [14] as well as providing information and symptom management support in cancer patients [15]. Increasing numbers of studies have begun to emphasize the importance of nursing professional social support in their patients' social support systems [13, 16]. The general purpose of nursing professional social support is to improve the patients' systemic rehabilitation, including physical, psychological, and social rehabilitation [17]. However, the existing nursing resources have mainly been used to solve the physical problems of cancer patients, and the patients' mental and social health needs have not received widespread attention. Several studies based on cancer patients' feedback have shown that care providers do not consider psychosocial support as an indispensable part of favorably supportive care [18–20]. This deficiency in professional supportive care might be derived from the mismatches between the services provided by health care personnel and the patients' expectations. Researchers investigated the cancer patients' practical needs and found that they were not entirely consistent with what medical professionals thought of the patients' needs [21]. Snyder et al. found that patients rated information about their treatments (options, benefits, and side
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effects) and care coordination as the most important issues and the issues for which they most wanted help from their health professionals. However, health professionals rated pain and other symptoms/side effects as the most important issues for patients and as the areas where they could provide the most help [22]. A recent study revealed that 79 % of esophageal and gastric cancer patients wanted as much information as possible about their diagnosis, but only 35 % of doctors were willing to give all of the available information [23]. To our knowledge, there is a lack of research in China investigating the health care personnel perspective regarding the nursing professional social support needs of cancer patients as well as what types of needs the nurses satisfy. This study was part of a series of studies aimed at exploring the perceptions and the provision of nursing professional social support to cancer patients from the viewpoint of health care personnel. The potential reasons for the discrepancy between the identified needs and the actual provision were also investigated.
Methods Design and participants A descriptive qualitative approach using focus group interviews was used. We used this design because of the scarcity of information regarding the nursing professional supportive needs of Chinese cancer patients. Participants were recruited using purposive sampling from three departments of two affiliated teaching hospitals of the Anhui Medical University in Anhui province, China. To be eligible for this study, the participant needed to meet the following criteria: (1) have at least 1 year of working experience in the care or treatment of cancer patients, (2) have a registered license for physicians or nurses, (3) are able to speak Mandarin, and (4) agree to the interview and speech recording. The guiding principle in deciding the sample size was data saturation. In total, 32 physicians and nurses were invited to participate in the interview. Procedure and ethical considerations After ethical approval was obtained from the Ethics Committee of the Anhui Medical University and Directors from each department, the researchers approached the potential participants and explained the study to them. The confidentiality and autonomy of the participants were ensured, and informed consent was sought from all participants. Upon their agreement, the participants were invited to attend the focus group interview. Semi-structured interview guideline for the focus group interview was developed to explore the perception and
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provision regarding cancer patients' needs for nursing professional social support from the perspective of healthcare professionals. The questions were derived from the literature on the healthcare professionals' perceptions of cancer patients' physical and psychosocial support needs [24, 25]. The final version of the guideline (Appendix) was formulated after a preliminary testing of its practicability. A total of five focus group interviews were conducted. Each focus group consisted of 8–10 individuals, including 2–3 investigators. All interviews were conducted in a quiet room either in the head nurse's office or the director's office, which was convenient for the participants. The tape-recorded interviews lasted approximately 60–90 min for each group. In all discussions, the venues had a close round table organization, and all the interviewees had the potential to make eye contact with each other throughout the process.
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researchers the ability to transfer the conclusions of this inquiry to other cases or to repeat, as closely as possible, the procedures of this project [28].
Results Demographic characteristics of the participants Among the 32 medical professionals, there were 10 physicians and 22 nurses. Details of the participants' demographic information are presented in Table 1. The majority were female (78.2 %), with ages ranging from 23–43 and a mean of 31.7 (SD 6.0) years. The length of time that the participants had worked ranged from 1–20 years, with a mean of 7.6 (SD 5.6) years. All of the doctors held a masters degree or above.
Data analysis A content analysis was performed with the data in which the message was systematically scrutinized and categorized according to the social support theoretical framework [26]. The analysis was carried out in several steps. Before the analysis, the researchers underwent rigorous code training, and all transcripts were read several times to understand the message. Notes were taken with key words in the margin of each transcript with special focus on the participants' descriptions of their judgments of the cancer patients' support needs [25]. Thereafter, following the procedures for content analysis, two authors separately coded all of the participants' responses to evaluate the coding reliability. Differences in coding were resolved through discussion, with agreement reached in all cases [27]. Finally, the text within a coding category was evaluated to determine whether it accurately fit the definition of the code. According to Lincoln and Guba's suggestion for a qualitative research project, four issues of trustworthiness must be considered: credibility, transferability, dependability, and conformability [28]. To address credibility, we had three researchers observe the interviews from different directions. During the coding process, we had two researchers separate the coding, verbatim accounts, and low-inference descriptions that focused on both negative and positive information at the same time. To address dependability and conformability, we relied on an independent audit of our research methods by a competent peer (WL Wang) who is a practicing professional in the field of psychological experience. After we completed the data analysis, our auditor thoroughly examined our audit trail, which consisted of the original transcripts, data analysis documents, field journal, and comments/notes from the member checking. To address transferability, our complete set of data analysis documents are on file and available upon request. This access to the inquiry's “paper trail” gives other
Categories and sub-categories identified for the following three research questions Research question (1) Perception regarding nursing professional social support needs among cancer patients from the health care personnel's point of view Five main categories emerged for this research question: (1) informational support, (2) emotional/psychological support, (3) technical support, (4) mobilization of social resources, and (5) palliative care during the final stages.
Table 1 Demographic characteristics of participants Variable
Health care personnel (n =32)
Age (years) Mean (SD) Range Gender
31.7 (6.0) 23–43
Male Female Working length (year) Mean (SD) Range Professional qualification Associate degree Bachelor degree Master degree Doctoral degree Employment status Oncologist Physician Head nurse Staff nurse
7 (21.8 %) 25 (78.2 %) 7.6 (5.6) 1–20 13 (40.6 %) 8 (25.0 %) 6 (18.8 %) 5 (15.6 %) 4 (12.5 %) 6 (18.8 %) 4 (12.5 %) 18 (56.2 %)
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Descriptions of themes as well as several sub-categories and important components that explained the phenomena of each nursing professional social support needs are described in the following (see Table 2). Informational support Almost all participants agreed that informational support from nurses was needed among cancer patients. Specifically, informational support consists of several aspects. Disease information guidance Information about “disease informing,” “treatment,” “rehabilitation and health protection,” “outcomes and prognosis,” “cancer spreading and recurring,” and “5-year survival rate” was thought to be necessary. Those who felt they had played a critical role in disease guidance would be expected to provide different content according to the different cancer stages as well. These stages were designated as follows: “during the diagnosis,” “operation,” “treatment,” “discharge,” “follow-up,” and the “remission and palliative” stage. Diet guidance The majority of the professionals conveyed that patients and family members were curious about recommended diets and that they actively consulted nurses. One nurse (Nurse 15) repeated six times that “they are very interested in my diet guidance.” Moreover, she also mentioned that patients need “supervision and organized lectures on dietary guidance,” which required the nurses to try to provide professional, simple, and thorough guidance and to fully consider the individual patients' differences.
Medical expenses guidance Professionals indicated that patients hoped the health personnel could reduce certain economic expenses to ease their burden by providing some specific guidance on reimbursement. These needs were addressed by informing patients about the “protective medical system,” the “New Rural Cooperative Medical System,” and “guidance of providing places, materials, and contents of reimbursement.” Meanwhile, the information about the reformation of the medical insurance system issued by government and medical organizations was also thought to be necessary. Special issues guidance Special issues, such as “sexuality,” “unhealthy lifestyle,” and “family heredity,” were perceived as expected issues; thus, the health personnel assumed that the cancer patient would need help overcoming these issues. There have been few active consultations on these issues, but this type of informational need, which was discussed only on the basis of in-depth communication, seems to be more important for cancer patients. For example, “patients really need us to provide information about some special issues. The misunderstanding or doubts will result in some inevitable negative influences,” a nurse explained (Nurse 13). Emotional/psychological support Psychological caring All participants agreed that almost every patient had “cancer phobia” or “anxiety and suffering,” and they wished that the nurses could try to understand their feelings and give psychological support accordingly. Some typical examples from the nurses' descriptions were as follows, “Although it did not happen to you, you could
Table 2 Categories, descriptions of categories, and sub-categories Categories
Descriptions of categories
Sub-categories
Informational support
Nurses provide cancer patients with disease-, therapy-, and nursing-related information or guidance by understanding the patients' needs during their illness.
Emotional/psychological support
Nurses understand, empathize, and care for cancer patients by undertaking emotional/psychological related measures, and they try their best to manage the patients' emotional/ psychological reactions to help decrease the patients' negative effects. Nurses provide some practical services/skills, such as clinical care techniques, disease observation, management of symptoms and complications, and coordination of treatment. Nurses assist cancer patients in establishing their related social support networks and utilizing available social resources to promote rehabilitation or return to their pre-disease social status.
Disease information guidance Diet guidance Medical expenses guidance Special issues guidance Psychological caring Esteem support Establishment of relationship Appropriate coping
Technical support
Mobilization of social resources
Palliative care
Nurses help provide some targeted palliative support/education to cancer patients to reduce their fear of death or to family members to ease their sadness or grief during a particular stage.
Entries in italics are supportive care needs that are difficult to satisfy
Providing proficient nursing skills Disease observation Symptom management Establishment and utilization of social resources Returning to society Peer support Death education Concerning family members
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understand why they need the nurses' psychological caring if you try to put yourself into their shoes” (Nurse 7); “Patients hope they could be given psychological comfort, helping to increase their confidence and encourage them in their most helpless time” (Nurse 13); and “Patients need the psychological care. They even wish the nurse could provide it 24 h a day” (Physician 2). Of course, this type of psychological caring was “specific and targeted” to different disease- and psychology-related stages, such as “during the diagnosis,” “after hospitalization or discharge,” “the process of disease development,” and the “denial stage or anger stage.” Esteem support Nurses' description of the cancer patients' need for esteem was related to their dissatisfaction with their routine care. The nurses reported that “Sometimes they have the feeling of being abandoned once they get ill, so they need to be recognized, paid attention to, and even put higher emphasis on” (Nurse 3) and “They had the need to be loved, esteemed, and even in the terminal stage…they hoped the nurses could respect their privacy, religious beliefs, and personal rights” (Nurse 9). Establishment of relationship Most professionals highlighted the importance of a favorable relationship between the nurses and/or doctors and the patients, with particular emphasis on the nurse–patient relationship, as a desired source of emotional support for cancer patients. It is essential to establish indepth nurse–patient communication and provide supportive care. The nurses reported, “Patients hope to establish a better nurse–patient relationship so that they can trust nurses, and then they could actively talk through some physical and psychological problems with you” (Nurse 8) and “Patients are willing to express their feelings only after the establishment of a close relationship with health personnel. In this case, nurses should play an active role for helping patients to establish this kind of relationship” (Nurse 13). Appropriate coping Under the influence of negative emotions, participants found that the patients needed help with appropriate coping strategies. Our participants reported, “Some cancer patients are really in a state of being shocked; they do not know how to face the diagnosis and the corresponding treatment. So, they indeed need help from nurses to develop effective coping strategies” (Physician 2) and “The specific-coping strategies were variable for different individuals. So nurses need some basic skills for identifying the appropriate coping strategies based on the patients' needs” (Physician 3). Technical support There were three sub-themes for technical support, which are described below.
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Providing proficient nursing skills Almost all of the participants mentioned that nursing skills were very important to hospitalized cancer patients. Overall, patients had relatively high expectations of nursing skills, which may be due to the patients' poor nutritional status and vascular damage from long-term chemotherapy. The participants reported, “During the process of injection, they need a painless injection from a skilled nurse” (Nurse 14) and “Patients really care about the nursing skills, and the relationship between the patient and the nurse will immediately get worse when medicine exosmosis happens after an intravenous injection. So, for cancer patients, they need nurses to provide proficient skills” (Nurse 8). Disease observation Health professionals need to assess and observe the patients' condition, especially as the disease condition changes over time. Health professionals must recognize abnormal clinical manifestations and determine which supportive needs should be prioritized. There were further descriptions of these observations, such as the observation of “drainage of tubes,” “side effects of chemotherapy drugs,” and “lymphatic circumfluence obstacle edema.” Symptom management support Reducing symptom distress and satisfying the patients' needs for symptom management support were frequently described. For example, patients needed nurses to help them alleviate their suffering from pain. A nurse said, “When we are in the ward, patients will say, as long as I do not feel pain, you could use any means to help me solve or relieve my condition. They hope we can help them with their pain” (Nurse 7). Apart from the pain symptoms, there were many other related syndromes and complications. These were related to the different types of cancer, routines of treatment, or care in general. For example, our participants reported, “For lung cancer patients, they hope the nurses can help them keep the respiratory tract unobstructed and control related respiratory complications” (Physician 2), and “For breast cancer patients, they wish nurses can help them prevent or relieve their lymphatic circumfluence obstacle edema” (Physician 7). Mobilization of social resources Establishment and utilization of social resources The health care personnel presumed that cancer patients could ask for help from a social support network consisting of “family relatives,” “social organizations,” “peers,” and even “some religious organizations,” instead of health care personnel alone. However, some of the patients might not know or have access to these potential support resources. Thus, nurses could help the patients identify their social connections and maximize their utilization of social support. Our participants reported, “Patients do not know how to search for support. They need nurses' help, for example, identifying potential sources
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for getting support” (Nurse 8) and “Many patients' family members also do not know how to give support to patients. So, patients need us to educate their family members, and then a supportive network could be formulated” (Nurse 13). Returning to society Some participants said that their patients wanted to mobilize their own resources to prepare for returning to society. They reported that “After surgery, for example, some breast cancer patients are unwilling to go to public baths, they feel inferior and confused about how to fit into the society/family. In this case, they need nurses' support to prepare them for returning to society” (Nurse 20), and “Patients sometimes have the illusion that people are looking at them strangely. In fact, they are afraid of being isolated from society. Nurses could help patients obtain more assistance from their own support network” (Physician 8).
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Research question (2) The actual provision of the nursing professional social support given by clinical nurses Throughout the interview, the participants referenced a gap between the identified needs and the actual provisions. Generally, they indicated that the main type of support that nurses provide is informational support as well as emotional, psychological, and technical support (see Table 3). Providing help with palliative care and mobilizing social resources (except peer support) are difficult to handle. Unfortunately, these socalled professional social supports still have quite a few weaknesses.
Informational support
Peer support Peer support was mentioned by nearly all participants in their descriptions of the needs that patients have during a hospital stay or after discharge. According to a nurse, “they hope we will introduce them to similar cancer patients to obtain more positive energy”; “Patients ask us to assign them to the same ward according to the diagnosis, thus they can share their feelings/resources”. One of the physicians stated, “Patients hope that nurses will organize health-related lectures or provide appropriate sites/resources to improve the communication/support among peers” (Physician 3).
Information about the disease, diet, medical expenses, and special issues was often provided by nurses. However, health care personnel try to avoid sharing some disease-related information directly with patients for many reasons. For example, the health care professionals selectively informed patients according to their age, individual differences, level of education, family wishes, and understanding of the disease. Consequently, this type of information is asymmetrical. Some professionals said that “we sometimes focus on a patients' care primarily during a certain episode of the disease, and the overall continuum is ignored, especially in the process of terminating the medical relationship between nurses and patients, which undesirably leads to a lack of follow-up.” Some
Palliative care
Table 3 The explanations of nurses' actual provision of professional social support
Death education Although death is a sensitive topic that is seldom discussed with patients, some nurses still perceive that advanced cancer patients would benefit from education about death. Our participants reported, “To some extent, some dying patients could accept the talk about death. Some of them even actively consulted me to help them face death calmly” (Nurse 12) and “Cancer patients need death education to accept death peacefully and thus improve the quality of the end of their lives” (Physician 4). Concerning family members In the participants' opinion, some cancer patients also hoped that nurses could help with the feelings of their family members, especially working to ease their sadness. Our participants reported, “Although family members can face patients' death more calmly, the continuous negative effects cannot be neglected in the short time” (Nurse 22). The participants also reported, “Palliative patients hope we can also release/minimize their family's sadness,” “give similar support/care to their family at the same time,” and “help their family to accept the reality of their death/ condition”.
Categories
Explanations
“We update the diet information on the blackboard in the corridor weekly to achieve the purpose of delivering information” (Nurse 15). “Nurses often provide the information to patients. For instance, they tell lung cancer patients the importance of changing their unhealthy lifestyles, such as abstaining from tobacco, for better recovery” (Physician 5). Emotional/ “We have comforted patients to ease their worry, psychological touched them, and given some positive examples to support help them better cooperate with therapy or nursing” (Nurse 14). “We have encouraged patients not to give up” (Nurse 3) Technical “Technical support is a crucial part of our work; we do support it skillfully every day to care for patients” (Nurse 8). “We always assess the patient's symptoms and cooperate with the physicians to manage them in the first place” (Nurse 14). Peer support “We have organized groups of cancer patients with the same diagnosis and launched some related activities for them” (Nurse 22) “We have arranged patients in the same ward to help them communicate with each other” (Nurse 13).
Informational support
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participants also found that inadequate informational support was the source of medical disputes.
palliative care; limited social resources; and lack of a suitable assessment tool.
Emotional/psychological support
Lack of awareness of how to search for professional support
Emotional/psychological support was often defined as providing psychological care, establishing a better patient–nurse relationship, and respecting patients. This type of support was described as being very important, but it is sometimes unsatisfactorily provided. Our participants reported that they offer emotional/psychological support “only to comfort or care,” they “don't really understand the so-called psychological nursing,” they consider this type of support “non-professional,” etc. Some participants suggested that nurses should be given training from professional psychological experts.
The lack of awareness of how to actively search for support might be influenced by the patients' education level, socioeconomic status, the severity of the disease, and traditional values or personality. Our participants reported, “Some unprivileged patients think the only urgent thing for them is to get the effective treatment. They might not be concerned about any other issues, and they do not have the awareness of seeking the professional support” (Nurse 11). Some patients were “influenced by Chinese traditional value, some patients hesitate to ask for help because they think it might disturb the nurses too much” (Nurse 9).
Technical support Lack of training and ability to provide specific support Technical support was provided by nurses. Technical support is an essential type of support that nurses provide during routine nursing, and it directly improved the exchange and satisfaction between the nurses and patients. However, there were still some unsatisfactory situations. Some nurses said that junior nurses did not always have proficient nursing skills. Meanwhile, some participants admitted that they lacked technical support skills for preventing complications, which needs to be further strengthened. Peer support Peer support was the only part of the mobilization of social resources that was supported by nurses in clinics. Although peer support was arranged by the health care personnel, the support from peers was less specialized compared to the support from professionals. Because of the non-professional or partially professional nature of peer support, patients inevitably had to confront some negative effects caused by their peers (e.g., “misinformation,” “negative coping,” “peers' death,” “questions regarding the use of different drugs for the same disease,” and “being scared or misled by incorrect information from the Internet”). Research question (3) Key reasons for the gap between the identified needs and the actual provisions Throughout the interviews, the participants indicated that the key reasons for the discrepancy between the patients' needs and what is provided included both subjective and objective components. The health personnel reported that some patients lacked awareness of how to search for professional support. Many professionals were limited by their heavy workload; shortage of staff; lack of specific training, lack of ability to provide psychological nursing care or
The skills for providing specific support require “professional knowledge,” “coping and communication skills,” “observation and judgment,” “evaluation and mobilization of social resources,” etc. The participants reported that these abilities had individual variations. Though health care personnel wanted to improve these abilities to provide specific support, there were still some practical difficulties. For instance, our participants reported, “in fact, we have not received any specific training regarding the identification of cancer patients' psychological status or subsequent intervention measures. We just evaluate patients' psychological status according to our subjective impressions or experiences. How to improve our specific abilities is still a challenge for us” (Nurse 8) and “If we have the chance to gain more specialized knowledge, we would make efforts to change the situation, but currently, we don't know how to provide palliative care more effectively” (Nurse 10). Shortage of professional staff and heavy workload With respect to the shortage of nursing staff, the participants reported that few hospitals can meet the recommendations of the Chinese Nurses Association's standard of a nurse/patient ratio, which contributes to the adequacy of the support. Our participants reported, “Particularly, there is only one nurse on duty at noon or night in the ward, thus, she is too busy to even have a breath. It is impossible for the nurse to address the patients' needs” (Physician 2); “In the process of psychological nursing, if we have some psychological professional staff, we can evaluate their psychological states more accurately” (Physician 3); and “Due to the nature of work and the limited energy and time, it is unpractical for us to communicate in depth or satisfy patients' needs” (Nurse 14).
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The participants reported that the current evaluation of the patients' psychological status and other needs is quite subjective. Our participants reported, “If we want to give more accurate assessment, we have to rely on a standard tool, not make the judgment based on subjective imagination or perception” (Physician 2) and “We do need to evaluate the patients' psychological status during the hospitalization and record it in the medical history. However, we only use our subjective judgments because we cannot find any appropriate objective assessment tool” (Nurse 2). To our surprise, when asked whether nurses would use an assessment tool in the clinics if one were available, most of them expressed hesitation and stated that they would “consider using such an instrument if it would not increase the workload because we have many types of different assessment worksheets” (Nurse 9) and “we also do not know whether cancer patients would be willing to fill out the assessment tool or not” (Nurse 13).
to them, and the use of these resources remains low [33]. To optimize the utilization of resources, health care personnel should inform cancer patients of the potential sources of support. The reasons for unmet needs, from the health care professional's perspective, seem to be the heavy workload, the lack of specific training, and the lack of an appropriate assessment tool. Recently, some clinical nursing reforms were launched at the national level in China, such as “providing holistic nursing care” and the “High-Quality Nursing Service Demonstration Project.” However, there is misinterpretation of these reforms in many hospitals [34]. Limited nursing human resources were largely reallocated to satisfy physiological needs and fundamental nursing care, while psychosocial needs were ignored. Meanwhile, nurses' lack of confidence in their ability to identify the social and psychological needs was repeatedly reported by nursing colleagues worldwide [35]. As a result, the provision of nursing professional support was inadequate at multiple levels. There is no simple description of the current status of unmet needs. Future research should pay attention to the following issues: (a) exploring the nursing professional support needs from cancer patients' perspective; (b) systematically assessing the patients' needs throughout the course of cancer to identify what the patients need and when these needs arise; (c) establishing electronic records across the cancer care continuum for follow-up convenience; (d) establishing interventions in the context of a caring relationship and needs assessment; and (e) developing a culturally appropriate tool for screening cancer patients for their nursing professional supportive care needs.
Discussion
Study limitations
From the perspective of health care personnel, cancer patients have many types of nursing professional supportive care needs. However, not all of these needs are actually met. Some needs are met, while others are not; for example, informational needs and emotional/psychological support needs are met, while palliative care needs are not met. Our findings are consistent with previous studies indicating that the majority of cancer patients do not have access to palliative care before death [29]. There are differences in the needs among the types, stages, and treatment statuses of cancer patients [30]. Thus, it is important to disclose why the deficiencies exist between the identified needs and actual provisions, especially for the unmet support needs. In agreement with Steele et al. who suggested that patients lack awareness about resources [31], we found that patients' lack of awareness might directly contribute to the reluctance of patients to ask for help. It is clear that while there were gaps in the services available [22, 32], only a small portion of patients actually knew about the potential services available
Several limitations need to be considered when interpreting the results from the present study. Firstly, the study was done in two affiliated hospitals in China which might limit the generalizability of the findings. However, we try to make nurses' voices be heard internationally when confronting the dilemmas between increased needs from patients and nurses' frustrations. Secondly, the number of nurses was greater than physicians. The authors did aim to recruit an equal number of physicians, but the temporary/overtime surgery limited the physicians' participation. In future research, additional strategies such as adequate communication should be prepared to improve the number of physicians. Finally, the translation process could affect the reliability and validity of the findings since the original interviews were conducted in Mandarin. In addressing this concern, all Mandarin scripts were translated and double checked by a bilingual Ph.D. faculty and another professional translator. Additionally, the grammatical errors were not corrected in the “quotations” in order to keep it as real verbatim.
Imperfect social service system The imperfect social service system mainly consisted of a “lack of a specialized organization with clear social function” and “flawed insurance policy.” It is difficult for both patients and nurses to clearly identify a specialized organization that could continuously provide support after the patients are discharged. Future cooperation between the hospital, the community, and social institutions is necessary. Lack of appropriate assessment tools
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Conclusion From the perspective of health care personnel, cancer patients have several types of nursing professional social support needs, such as informational, emotional/psychological, and technical support needs, including mobilization of social resources and palliative care assistance during certain stages. However, not all of these needs are actually met by the nurses. A solution for this discrepancy should be developed in the future. Acknowledgments The National Natural Science Foundation of China (approval number 81101750) and the Scientific and Academic Foundation for Excellent Doctoral Project in Anhui Medical University (approval number 2010XJ33) provided funds. Conflicts of interest None.
Appendix: Interview guide 1 As a health care personnel, what are your perceptions regarding cancer patients' common professional supportive needs from nurses? 2 Among those identified needs, what are nurses' actual provisions to cancer patients during their hospitalization period and discharge from the hospital? 3 What are potential reasons for the discrepancy between the identified needs and the actual provisions when providing nursing professional support to cancer patients in China?
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ORIGINAL ARTICLE
Perception and fulfillment of cancer patients' nursing professional social support needs: from the health care personnel point of view Jingfang Hong & Yongxia Song & Jingjing Liu & Weili Wang & Wenru Wang
Received: 3 October 2013 / Accepted: 15 November 2013 / Published online: 28 November 2013 # Springer-Verlag Berlin Heidelberg 2013
Abstract Purpose This study aimed to (1) explore the needs of cancer patients regarding common nursing professional social support from the perspective of physicians and nurses, (2) identify what type of needs clinical nurses actually fulfill and what remains to be improved, and (3) analyze the potential reasons for the gap between the identified needs and those that are fulfilled. Methods A qualitative approach using focus group interviews was adopted to explore the perception and provision of cancer patients' needs regarding nursing professional social support. A purposive sample of 32 health care professionals was recruited from two teaching hospitals in Anhui province, China. Five focus group interviews were conducted and all interviews were tape-recorded and transcribed verbatim. A content analysis was performed with the data. Jingfang Hong and Yongxia Song are co-first authors and contributed equally to this work J. Hong (*) : Y. Song : J. Liu : W. Wang (*) School of Nursing, Anhui Medical University, No.69 Mei Shan Road, Shu Shan District, Hefei, Anhui Province, People’s Republic of China e-mail: [email protected] e-mail: [email protected] J. Hong e-mail: [email protected] Y. Song e-mail: [email protected] J. Liu e-mail: [email protected] W. Wang Alice Centre for Nursing Studies, Yong Loo Lin School of Medicine, Level 2, Clinical Research Centre, Block MD 11,10 Medical Drive, Singapore, Singapore e-mail: [email protected]
Results The healthcare professionals perceived various nursing professional support needs of cancer patients; these include informational, emotional/psychological, and technical support needs; the mobilization of social resources; and palliative care during certain stages. The findings also indicated that there are still many unmet needs, especially needs related to the mobilization of social resources and palliative care. The reasons for the deficiencies in the fulfillment of these needs varied and included both subjective and objective aspects, such as the patients' lack of awareness of how to search for professional support, a shortage of professional staff, and the lack of a culturally appropriate assessment tool. Conclusions Cancer patients' supportive care needs were not always fully provided by nurses, even when these needs were identified by healthcare professionals. Nursing professional social support needs should be assessed quickly and effectively so that the appropriate interventions can be offered to cancer patients. Keywords Professional social support . Identified needs . Actual provision . Cancer patient
Introduction Many cancer patients face difficulties in managing their daily activities, and these patients experience emotional problems and other related issues for which supportive care is extremely important. In a health care context where specialized supportive care services are often unavailable or difficult to access, supportive care largely remains the responsibility of the medical and nursing professionals [1]. Social support was defined as the social resources that a person perceives to be available or that are actually provided in the context of both formal support groups and informal helping relationships [2]. Social support is one of the main
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factors promoting the physical and psychological rehabilitation of cancer patients. Previous studies have consistently demonstrated that perceived social support is significantly related to the health-related quality of life [3], the level of hope [4], and improvements in cancer patients' behaviors related to hospitalization [5]. In addition, studies have revealed that a higher level of perceived social support significantly improved the patients' immune function [6], psychological adjustment [7], positive coping strategies, psychosomatic symptoms, and lifespan [8]. For patients with cancer, the social support system is mainly composed of three components, namely, the “family consanguinity aspect,” the “moral consanguinity aspect,” and the “medical consanguinity aspect” [9]. Among them, the first two aspects refer to the non-professional social support provided by the patient's family, friends, or social organizations. However, “medical consanguinity” is considered an important way in which healthcare professionals provide professional social support during the medical treatment period. Health care professionals must assume responsibility for providing professional supportive care due to their professional requirements. Studies have shown that supportive care provided by health care professionals could reduce the degree of disease invasion, improve the level of health consciousness of patients with chronic diseases [10], and increase the patients' trust in professionals [11]. Studies have also revealed that cancer patients believe that nurses are one of the most important sources of social support [12, 13]. Recently, the results of interviews with healthcare professionals, including oncologists, surgeons, and nursing experts, have also suggested that nurses should undertake the responsibility of identifying and managing emotional distress [14] as well as providing information and symptom management support in cancer patients [15]. Increasing numbers of studies have begun to emphasize the importance of nursing professional social support in their patients' social support systems [13, 16]. The general purpose of nursing professional social support is to improve the patients' systemic rehabilitation, including physical, psychological, and social rehabilitation [17]. However, the existing nursing resources have mainly been used to solve the physical problems of cancer patients, and the patients' mental and social health needs have not received widespread attention. Several studies based on cancer patients' feedback have shown that care providers do not consider psychosocial support as an indispensable part of favorably supportive care [18–20]. This deficiency in professional supportive care might be derived from the mismatches between the services provided by health care personnel and the patients' expectations. Researchers investigated the cancer patients' practical needs and found that they were not entirely consistent with what medical professionals thought of the patients' needs [21]. Snyder et al. found that patients rated information about their treatments (options, benefits, and side
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effects) and care coordination as the most important issues and the issues for which they most wanted help from their health professionals. However, health professionals rated pain and other symptoms/side effects as the most important issues for patients and as the areas where they could provide the most help [22]. A recent study revealed that 79 % of esophageal and gastric cancer patients wanted as much information as possible about their diagnosis, but only 35 % of doctors were willing to give all of the available information [23]. To our knowledge, there is a lack of research in China investigating the health care personnel perspective regarding the nursing professional social support needs of cancer patients as well as what types of needs the nurses satisfy. This study was part of a series of studies aimed at exploring the perceptions and the provision of nursing professional social support to cancer patients from the viewpoint of health care personnel. The potential reasons for the discrepancy between the identified needs and the actual provision were also investigated.
Methods Design and participants A descriptive qualitative approach using focus group interviews was used. We used this design because of the scarcity of information regarding the nursing professional supportive needs of Chinese cancer patients. Participants were recruited using purposive sampling from three departments of two affiliated teaching hospitals of the Anhui Medical University in Anhui province, China. To be eligible for this study, the participant needed to meet the following criteria: (1) have at least 1 year of working experience in the care or treatment of cancer patients, (2) have a registered license for physicians or nurses, (3) are able to speak Mandarin, and (4) agree to the interview and speech recording. The guiding principle in deciding the sample size was data saturation. In total, 32 physicians and nurses were invited to participate in the interview. Procedure and ethical considerations After ethical approval was obtained from the Ethics Committee of the Anhui Medical University and Directors from each department, the researchers approached the potential participants and explained the study to them. The confidentiality and autonomy of the participants were ensured, and informed consent was sought from all participants. Upon their agreement, the participants were invited to attend the focus group interview. Semi-structured interview guideline for the focus group interview was developed to explore the perception and
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provision regarding cancer patients' needs for nursing professional social support from the perspective of healthcare professionals. The questions were derived from the literature on the healthcare professionals' perceptions of cancer patients' physical and psychosocial support needs [24, 25]. The final version of the guideline (Appendix) was formulated after a preliminary testing of its practicability. A total of five focus group interviews were conducted. Each focus group consisted of 8–10 individuals, including 2–3 investigators. All interviews were conducted in a quiet room either in the head nurse's office or the director's office, which was convenient for the participants. The tape-recorded interviews lasted approximately 60–90 min for each group. In all discussions, the venues had a close round table organization, and all the interviewees had the potential to make eye contact with each other throughout the process.
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researchers the ability to transfer the conclusions of this inquiry to other cases or to repeat, as closely as possible, the procedures of this project [28].
Results Demographic characteristics of the participants Among the 32 medical professionals, there were 10 physicians and 22 nurses. Details of the participants' demographic information are presented in Table 1. The majority were female (78.2 %), with ages ranging from 23–43 and a mean of 31.7 (SD 6.0) years. The length of time that the participants had worked ranged from 1–20 years, with a mean of 7.6 (SD 5.6) years. All of the doctors held a masters degree or above.
Data analysis A content analysis was performed with the data in which the message was systematically scrutinized and categorized according to the social support theoretical framework [26]. The analysis was carried out in several steps. Before the analysis, the researchers underwent rigorous code training, and all transcripts were read several times to understand the message. Notes were taken with key words in the margin of each transcript with special focus on the participants' descriptions of their judgments of the cancer patients' support needs [25]. Thereafter, following the procedures for content analysis, two authors separately coded all of the participants' responses to evaluate the coding reliability. Differences in coding were resolved through discussion, with agreement reached in all cases [27]. Finally, the text within a coding category was evaluated to determine whether it accurately fit the definition of the code. According to Lincoln and Guba's suggestion for a qualitative research project, four issues of trustworthiness must be considered: credibility, transferability, dependability, and conformability [28]. To address credibility, we had three researchers observe the interviews from different directions. During the coding process, we had two researchers separate the coding, verbatim accounts, and low-inference descriptions that focused on both negative and positive information at the same time. To address dependability and conformability, we relied on an independent audit of our research methods by a competent peer (WL Wang) who is a practicing professional in the field of psychological experience. After we completed the data analysis, our auditor thoroughly examined our audit trail, which consisted of the original transcripts, data analysis documents, field journal, and comments/notes from the member checking. To address transferability, our complete set of data analysis documents are on file and available upon request. This access to the inquiry's “paper trail” gives other
Categories and sub-categories identified for the following three research questions Research question (1) Perception regarding nursing professional social support needs among cancer patients from the health care personnel's point of view Five main categories emerged for this research question: (1) informational support, (2) emotional/psychological support, (3) technical support, (4) mobilization of social resources, and (5) palliative care during the final stages.
Table 1 Demographic characteristics of participants Variable
Health care personnel (n =32)
Age (years) Mean (SD) Range Gender
31.7 (6.0) 23–43
Male Female Working length (year) Mean (SD) Range Professional qualification Associate degree Bachelor degree Master degree Doctoral degree Employment status Oncologist Physician Head nurse Staff nurse
7 (21.8 %) 25 (78.2 %) 7.6 (5.6) 1–20 13 (40.6 %) 8 (25.0 %) 6 (18.8 %) 5 (15.6 %) 4 (12.5 %) 6 (18.8 %) 4 (12.5 %) 18 (56.2 %)
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Descriptions of themes as well as several sub-categories and important components that explained the phenomena of each nursing professional social support needs are described in the following (see Table 2). Informational support Almost all participants agreed that informational support from nurses was needed among cancer patients. Specifically, informational support consists of several aspects. Disease information guidance Information about “disease informing,” “treatment,” “rehabilitation and health protection,” “outcomes and prognosis,” “cancer spreading and recurring,” and “5-year survival rate” was thought to be necessary. Those who felt they had played a critical role in disease guidance would be expected to provide different content according to the different cancer stages as well. These stages were designated as follows: “during the diagnosis,” “operation,” “treatment,” “discharge,” “follow-up,” and the “remission and palliative” stage. Diet guidance The majority of the professionals conveyed that patients and family members were curious about recommended diets and that they actively consulted nurses. One nurse (Nurse 15) repeated six times that “they are very interested in my diet guidance.” Moreover, she also mentioned that patients need “supervision and organized lectures on dietary guidance,” which required the nurses to try to provide professional, simple, and thorough guidance and to fully consider the individual patients' differences.
Medical expenses guidance Professionals indicated that patients hoped the health personnel could reduce certain economic expenses to ease their burden by providing some specific guidance on reimbursement. These needs were addressed by informing patients about the “protective medical system,” the “New Rural Cooperative Medical System,” and “guidance of providing places, materials, and contents of reimbursement.” Meanwhile, the information about the reformation of the medical insurance system issued by government and medical organizations was also thought to be necessary. Special issues guidance Special issues, such as “sexuality,” “unhealthy lifestyle,” and “family heredity,” were perceived as expected issues; thus, the health personnel assumed that the cancer patient would need help overcoming these issues. There have been few active consultations on these issues, but this type of informational need, which was discussed only on the basis of in-depth communication, seems to be more important for cancer patients. For example, “patients really need us to provide information about some special issues. The misunderstanding or doubts will result in some inevitable negative influences,” a nurse explained (Nurse 13). Emotional/psychological support Psychological caring All participants agreed that almost every patient had “cancer phobia” or “anxiety and suffering,” and they wished that the nurses could try to understand their feelings and give psychological support accordingly. Some typical examples from the nurses' descriptions were as follows, “Although it did not happen to you, you could
Table 2 Categories, descriptions of categories, and sub-categories Categories
Descriptions of categories
Sub-categories
Informational support
Nurses provide cancer patients with disease-, therapy-, and nursing-related information or guidance by understanding the patients' needs during their illness.
Emotional/psychological support
Nurses understand, empathize, and care for cancer patients by undertaking emotional/psychological related measures, and they try their best to manage the patients' emotional/ psychological reactions to help decrease the patients' negative effects. Nurses provide some practical services/skills, such as clinical care techniques, disease observation, management of symptoms and complications, and coordination of treatment. Nurses assist cancer patients in establishing their related social support networks and utilizing available social resources to promote rehabilitation or return to their pre-disease social status.
Disease information guidance Diet guidance Medical expenses guidance Special issues guidance Psychological caring Esteem support Establishment of relationship Appropriate coping
Technical support
Mobilization of social resources
Palliative care
Nurses help provide some targeted palliative support/education to cancer patients to reduce their fear of death or to family members to ease their sadness or grief during a particular stage.
Entries in italics are supportive care needs that are difficult to satisfy
Providing proficient nursing skills Disease observation Symptom management Establishment and utilization of social resources Returning to society Peer support Death education Concerning family members
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understand why they need the nurses' psychological caring if you try to put yourself into their shoes” (Nurse 7); “Patients hope they could be given psychological comfort, helping to increase their confidence and encourage them in their most helpless time” (Nurse 13); and “Patients need the psychological care. They even wish the nurse could provide it 24 h a day” (Physician 2). Of course, this type of psychological caring was “specific and targeted” to different disease- and psychology-related stages, such as “during the diagnosis,” “after hospitalization or discharge,” “the process of disease development,” and the “denial stage or anger stage.” Esteem support Nurses' description of the cancer patients' need for esteem was related to their dissatisfaction with their routine care. The nurses reported that “Sometimes they have the feeling of being abandoned once they get ill, so they need to be recognized, paid attention to, and even put higher emphasis on” (Nurse 3) and “They had the need to be loved, esteemed, and even in the terminal stage…they hoped the nurses could respect their privacy, religious beliefs, and personal rights” (Nurse 9). Establishment of relationship Most professionals highlighted the importance of a favorable relationship between the nurses and/or doctors and the patients, with particular emphasis on the nurse–patient relationship, as a desired source of emotional support for cancer patients. It is essential to establish indepth nurse–patient communication and provide supportive care. The nurses reported, “Patients hope to establish a better nurse–patient relationship so that they can trust nurses, and then they could actively talk through some physical and psychological problems with you” (Nurse 8) and “Patients are willing to express their feelings only after the establishment of a close relationship with health personnel. In this case, nurses should play an active role for helping patients to establish this kind of relationship” (Nurse 13). Appropriate coping Under the influence of negative emotions, participants found that the patients needed help with appropriate coping strategies. Our participants reported, “Some cancer patients are really in a state of being shocked; they do not know how to face the diagnosis and the corresponding treatment. So, they indeed need help from nurses to develop effective coping strategies” (Physician 2) and “The specific-coping strategies were variable for different individuals. So nurses need some basic skills for identifying the appropriate coping strategies based on the patients' needs” (Physician 3). Technical support There were three sub-themes for technical support, which are described below.
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Providing proficient nursing skills Almost all of the participants mentioned that nursing skills were very important to hospitalized cancer patients. Overall, patients had relatively high expectations of nursing skills, which may be due to the patients' poor nutritional status and vascular damage from long-term chemotherapy. The participants reported, “During the process of injection, they need a painless injection from a skilled nurse” (Nurse 14) and “Patients really care about the nursing skills, and the relationship between the patient and the nurse will immediately get worse when medicine exosmosis happens after an intravenous injection. So, for cancer patients, they need nurses to provide proficient skills” (Nurse 8). Disease observation Health professionals need to assess and observe the patients' condition, especially as the disease condition changes over time. Health professionals must recognize abnormal clinical manifestations and determine which supportive needs should be prioritized. There were further descriptions of these observations, such as the observation of “drainage of tubes,” “side effects of chemotherapy drugs,” and “lymphatic circumfluence obstacle edema.” Symptom management support Reducing symptom distress and satisfying the patients' needs for symptom management support were frequently described. For example, patients needed nurses to help them alleviate their suffering from pain. A nurse said, “When we are in the ward, patients will say, as long as I do not feel pain, you could use any means to help me solve or relieve my condition. They hope we can help them with their pain” (Nurse 7). Apart from the pain symptoms, there were many other related syndromes and complications. These were related to the different types of cancer, routines of treatment, or care in general. For example, our participants reported, “For lung cancer patients, they hope the nurses can help them keep the respiratory tract unobstructed and control related respiratory complications” (Physician 2), and “For breast cancer patients, they wish nurses can help them prevent or relieve their lymphatic circumfluence obstacle edema” (Physician 7). Mobilization of social resources Establishment and utilization of social resources The health care personnel presumed that cancer patients could ask for help from a social support network consisting of “family relatives,” “social organizations,” “peers,” and even “some religious organizations,” instead of health care personnel alone. However, some of the patients might not know or have access to these potential support resources. Thus, nurses could help the patients identify their social connections and maximize their utilization of social support. Our participants reported, “Patients do not know how to search for support. They need nurses' help, for example, identifying potential sources
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for getting support” (Nurse 8) and “Many patients' family members also do not know how to give support to patients. So, patients need us to educate their family members, and then a supportive network could be formulated” (Nurse 13). Returning to society Some participants said that their patients wanted to mobilize their own resources to prepare for returning to society. They reported that “After surgery, for example, some breast cancer patients are unwilling to go to public baths, they feel inferior and confused about how to fit into the society/family. In this case, they need nurses' support to prepare them for returning to society” (Nurse 20), and “Patients sometimes have the illusion that people are looking at them strangely. In fact, they are afraid of being isolated from society. Nurses could help patients obtain more assistance from their own support network” (Physician 8).
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Research question (2) The actual provision of the nursing professional social support given by clinical nurses Throughout the interview, the participants referenced a gap between the identified needs and the actual provisions. Generally, they indicated that the main type of support that nurses provide is informational support as well as emotional, psychological, and technical support (see Table 3). Providing help with palliative care and mobilizing social resources (except peer support) are difficult to handle. Unfortunately, these socalled professional social supports still have quite a few weaknesses.
Informational support
Peer support Peer support was mentioned by nearly all participants in their descriptions of the needs that patients have during a hospital stay or after discharge. According to a nurse, “they hope we will introduce them to similar cancer patients to obtain more positive energy”; “Patients ask us to assign them to the same ward according to the diagnosis, thus they can share their feelings/resources”. One of the physicians stated, “Patients hope that nurses will organize health-related lectures or provide appropriate sites/resources to improve the communication/support among peers” (Physician 3).
Information about the disease, diet, medical expenses, and special issues was often provided by nurses. However, health care personnel try to avoid sharing some disease-related information directly with patients for many reasons. For example, the health care professionals selectively informed patients according to their age, individual differences, level of education, family wishes, and understanding of the disease. Consequently, this type of information is asymmetrical. Some professionals said that “we sometimes focus on a patients' care primarily during a certain episode of the disease, and the overall continuum is ignored, especially in the process of terminating the medical relationship between nurses and patients, which undesirably leads to a lack of follow-up.” Some
Palliative care
Table 3 The explanations of nurses' actual provision of professional social support
Death education Although death is a sensitive topic that is seldom discussed with patients, some nurses still perceive that advanced cancer patients would benefit from education about death. Our participants reported, “To some extent, some dying patients could accept the talk about death. Some of them even actively consulted me to help them face death calmly” (Nurse 12) and “Cancer patients need death education to accept death peacefully and thus improve the quality of the end of their lives” (Physician 4). Concerning family members In the participants' opinion, some cancer patients also hoped that nurses could help with the feelings of their family members, especially working to ease their sadness. Our participants reported, “Although family members can face patients' death more calmly, the continuous negative effects cannot be neglected in the short time” (Nurse 22). The participants also reported, “Palliative patients hope we can also release/minimize their family's sadness,” “give similar support/care to their family at the same time,” and “help their family to accept the reality of their death/ condition”.
Categories
Explanations
“We update the diet information on the blackboard in the corridor weekly to achieve the purpose of delivering information” (Nurse 15). “Nurses often provide the information to patients. For instance, they tell lung cancer patients the importance of changing their unhealthy lifestyles, such as abstaining from tobacco, for better recovery” (Physician 5). Emotional/ “We have comforted patients to ease their worry, psychological touched them, and given some positive examples to support help them better cooperate with therapy or nursing” (Nurse 14). “We have encouraged patients not to give up” (Nurse 3) Technical “Technical support is a crucial part of our work; we do support it skillfully every day to care for patients” (Nurse 8). “We always assess the patient's symptoms and cooperate with the physicians to manage them in the first place” (Nurse 14). Peer support “We have organized groups of cancer patients with the same diagnosis and launched some related activities for them” (Nurse 22) “We have arranged patients in the same ward to help them communicate with each other” (Nurse 13).
Informational support
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participants also found that inadequate informational support was the source of medical disputes.
palliative care; limited social resources; and lack of a suitable assessment tool.
Emotional/psychological support
Lack of awareness of how to search for professional support
Emotional/psychological support was often defined as providing psychological care, establishing a better patient–nurse relationship, and respecting patients. This type of support was described as being very important, but it is sometimes unsatisfactorily provided. Our participants reported that they offer emotional/psychological support “only to comfort or care,” they “don't really understand the so-called psychological nursing,” they consider this type of support “non-professional,” etc. Some participants suggested that nurses should be given training from professional psychological experts.
The lack of awareness of how to actively search for support might be influenced by the patients' education level, socioeconomic status, the severity of the disease, and traditional values or personality. Our participants reported, “Some unprivileged patients think the only urgent thing for them is to get the effective treatment. They might not be concerned about any other issues, and they do not have the awareness of seeking the professional support” (Nurse 11). Some patients were “influenced by Chinese traditional value, some patients hesitate to ask for help because they think it might disturb the nurses too much” (Nurse 9).
Technical support Lack of training and ability to provide specific support Technical support was provided by nurses. Technical support is an essential type of support that nurses provide during routine nursing, and it directly improved the exchange and satisfaction between the nurses and patients. However, there were still some unsatisfactory situations. Some nurses said that junior nurses did not always have proficient nursing skills. Meanwhile, some participants admitted that they lacked technical support skills for preventing complications, which needs to be further strengthened. Peer support Peer support was the only part of the mobilization of social resources that was supported by nurses in clinics. Although peer support was arranged by the health care personnel, the support from peers was less specialized compared to the support from professionals. Because of the non-professional or partially professional nature of peer support, patients inevitably had to confront some negative effects caused by their peers (e.g., “misinformation,” “negative coping,” “peers' death,” “questions regarding the use of different drugs for the same disease,” and “being scared or misled by incorrect information from the Internet”). Research question (3) Key reasons for the gap between the identified needs and the actual provisions Throughout the interviews, the participants indicated that the key reasons for the discrepancy between the patients' needs and what is provided included both subjective and objective components. The health personnel reported that some patients lacked awareness of how to search for professional support. Many professionals were limited by their heavy workload; shortage of staff; lack of specific training, lack of ability to provide psychological nursing care or
The skills for providing specific support require “professional knowledge,” “coping and communication skills,” “observation and judgment,” “evaluation and mobilization of social resources,” etc. The participants reported that these abilities had individual variations. Though health care personnel wanted to improve these abilities to provide specific support, there were still some practical difficulties. For instance, our participants reported, “in fact, we have not received any specific training regarding the identification of cancer patients' psychological status or subsequent intervention measures. We just evaluate patients' psychological status according to our subjective impressions or experiences. How to improve our specific abilities is still a challenge for us” (Nurse 8) and “If we have the chance to gain more specialized knowledge, we would make efforts to change the situation, but currently, we don't know how to provide palliative care more effectively” (Nurse 10). Shortage of professional staff and heavy workload With respect to the shortage of nursing staff, the participants reported that few hospitals can meet the recommendations of the Chinese Nurses Association's standard of a nurse/patient ratio, which contributes to the adequacy of the support. Our participants reported, “Particularly, there is only one nurse on duty at noon or night in the ward, thus, she is too busy to even have a breath. It is impossible for the nurse to address the patients' needs” (Physician 2); “In the process of psychological nursing, if we have some psychological professional staff, we can evaluate their psychological states more accurately” (Physician 3); and “Due to the nature of work and the limited energy and time, it is unpractical for us to communicate in depth or satisfy patients' needs” (Nurse 14).
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The participants reported that the current evaluation of the patients' psychological status and other needs is quite subjective. Our participants reported, “If we want to give more accurate assessment, we have to rely on a standard tool, not make the judgment based on subjective imagination or perception” (Physician 2) and “We do need to evaluate the patients' psychological status during the hospitalization and record it in the medical history. However, we only use our subjective judgments because we cannot find any appropriate objective assessment tool” (Nurse 2). To our surprise, when asked whether nurses would use an assessment tool in the clinics if one were available, most of them expressed hesitation and stated that they would “consider using such an instrument if it would not increase the workload because we have many types of different assessment worksheets” (Nurse 9) and “we also do not know whether cancer patients would be willing to fill out the assessment tool or not” (Nurse 13).
to them, and the use of these resources remains low [33]. To optimize the utilization of resources, health care personnel should inform cancer patients of the potential sources of support. The reasons for unmet needs, from the health care professional's perspective, seem to be the heavy workload, the lack of specific training, and the lack of an appropriate assessment tool. Recently, some clinical nursing reforms were launched at the national level in China, such as “providing holistic nursing care” and the “High-Quality Nursing Service Demonstration Project.” However, there is misinterpretation of these reforms in many hospitals [34]. Limited nursing human resources were largely reallocated to satisfy physiological needs and fundamental nursing care, while psychosocial needs were ignored. Meanwhile, nurses' lack of confidence in their ability to identify the social and psychological needs was repeatedly reported by nursing colleagues worldwide [35]. As a result, the provision of nursing professional support was inadequate at multiple levels. There is no simple description of the current status of unmet needs. Future research should pay attention to the following issues: (a) exploring the nursing professional support needs from cancer patients' perspective; (b) systematically assessing the patients' needs throughout the course of cancer to identify what the patients need and when these needs arise; (c) establishing electronic records across the cancer care continuum for follow-up convenience; (d) establishing interventions in the context of a caring relationship and needs assessment; and (e) developing a culturally appropriate tool for screening cancer patients for their nursing professional supportive care needs.
Discussion
Study limitations
From the perspective of health care personnel, cancer patients have many types of nursing professional supportive care needs. However, not all of these needs are actually met. Some needs are met, while others are not; for example, informational needs and emotional/psychological support needs are met, while palliative care needs are not met. Our findings are consistent with previous studies indicating that the majority of cancer patients do not have access to palliative care before death [29]. There are differences in the needs among the types, stages, and treatment statuses of cancer patients [30]. Thus, it is important to disclose why the deficiencies exist between the identified needs and actual provisions, especially for the unmet support needs. In agreement with Steele et al. who suggested that patients lack awareness about resources [31], we found that patients' lack of awareness might directly contribute to the reluctance of patients to ask for help. It is clear that while there were gaps in the services available [22, 32], only a small portion of patients actually knew about the potential services available
Several limitations need to be considered when interpreting the results from the present study. Firstly, the study was done in two affiliated hospitals in China which might limit the generalizability of the findings. However, we try to make nurses' voices be heard internationally when confronting the dilemmas between increased needs from patients and nurses' frustrations. Secondly, the number of nurses was greater than physicians. The authors did aim to recruit an equal number of physicians, but the temporary/overtime surgery limited the physicians' participation. In future research, additional strategies such as adequate communication should be prepared to improve the number of physicians. Finally, the translation process could affect the reliability and validity of the findings since the original interviews were conducted in Mandarin. In addressing this concern, all Mandarin scripts were translated and double checked by a bilingual Ph.D. faculty and another professional translator. Additionally, the grammatical errors were not corrected in the “quotations” in order to keep it as real verbatim.
Imperfect social service system The imperfect social service system mainly consisted of a “lack of a specialized organization with clear social function” and “flawed insurance policy.” It is difficult for both patients and nurses to clearly identify a specialized organization that could continuously provide support after the patients are discharged. Future cooperation between the hospital, the community, and social institutions is necessary. Lack of appropriate assessment tools
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Conclusion From the perspective of health care personnel, cancer patients have several types of nursing professional social support needs, such as informational, emotional/psychological, and technical support needs, including mobilization of social resources and palliative care assistance during certain stages. However, not all of these needs are actually met by the nurses. A solution for this discrepancy should be developed in the future. Acknowledgments The National Natural Science Foundation of China (approval number 81101750) and the Scientific and Academic Foundation for Excellent Doctoral Project in Anhui Medical University (approval number 2010XJ33) provided funds. Conflicts of interest None.
Appendix: Interview guide 1 As a health care personnel, what are your perceptions regarding cancer patients' common professional supportive needs from nurses? 2 Among those identified needs, what are nurses' actual provisions to cancer patients during their hospitalization period and discharge from the hospital? 3 What are potential reasons for the discrepancy between the identified needs and the actual provisions when providing nursing professional support to cancer patients in China?
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