Developing a managed clinical network in palliative care: a realistic evaluation

BACKGROUND: The attainment of evidence-based practice is at the fore of the international practice development agenda. It is therefore imperative that robust evaluation methodologies are available to scrutinise new approaches to service development. OBJECTIVES: This paper reflects on the merits and challenges of realistic evaluation design in the establishment of a new managed clinical network (MCN) approach to implementing a guideline concerned with the care of individuals with cancer-related pain. DESIGN AND METHODS: There were three evaluation points scrutinising three versions of the MCN approach to care. At each stage, steps were taken to identify the context, mechanisms and outcomes associated with the version of the model under scrutiny. Findings from patient-centred case studies fed into realistic evaluation interviews with the management group. SETTING: A rural primary care setting in Scotland. PARTICIPANTS: Three older men, their families, and the doctors and nurses providing direct care participated, along with 13 members of the network management group. RESULTS: The investigation highlighted the level of practitioner effort required to introduce the MCN approach to care. Progress was much slower than anticipated, at times frustrated by inexperience in change management and unfamiliarity with leading practice development projects and supporting practitioner learning. Issues to do with the age appropriateness of the evidence base in relation to the care of frail older people were also apparent. The professional group that experienced most role change were district nurses and community pharmacists. CONCLUSION: The collaborative approach nurtured by the realistic evaluation framework was found particularly helpful and there was consensus that the evaluation had become integral to the intervention itself. There were a number of methodological challenges and a need to limit the depth of 'realistic unravelling'. However, as a formative approach, in the messy world of interdisciplinary practice development, realistic evaluation proved a worthy design.     

Perception and fulfillment of cancer patients' nursing professional social support needs: from the health care personnel point of view

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.

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.     

危重症患儿临终关怀模式的构建

目的 建立科学、符合临床需要的危重症患儿临终关怀模式。方法 通过文献检索和半结构式访谈,初步建立危重症患儿临终关怀模式函询问卷,选取全国8所儿童医院的24名专家进行2轮函询,并邀请医疗、护理、心理、营养及社工领域的专家进行团体访谈。结果 通过2轮专家函询及团体访谈,确定了危重症患儿临终关怀模式,包括准备阶段、临终阶段、善终阶段,临终阶段的整体性照护包括疼痛管理、营养管理、舒适护理、心理干预。结论 危重症患儿临终关怀模式的科学性和可靠性较好,为危重症临终患儿的护理提供了借鉴。     

Interprofessional care review with medical residents: lessons learned, tensions aired--a pilot study

Integrated interprofessional care teams are the focus of Canadian and American recommendations about the future of health care. Keeping with this, a family medicine teaching site developed an educational initiative to expose trainees to interprofessional care processes and learning (Interprofessional Care Review; IPC). A formative evaluation pilot study was completed using one-on-one interviews and a focus group (n = 6) with family medicine residents. A semi-structured guide was utilized regarding: knowledge, skills and attitudes related to interprofessional care; their experience of the processes utilized in IPC. Data were analyzed using content analysis. Residents' perspectives on their learning revolved around four themes: changes to understanding and practice of interprofessional care; personal impact of IPC; learning about other health professionals; tension and challenges of IPC learning and clinical implementation. Residents valued the educational experience, but identified that faculty supervisors provided "mixed messages" in the value of collaborating with other health professionals. Implications regarding future educational and research opportunities are discussed.     

Issues of intimacy and sexuality in the face of cancer: the patient perspective

Experiencing a diagnosis of cancer has the potential to dramatically alter the way in which a person experiences intimate and sexual aspects of their lives. This article draws on data from a larger study into issues of intimacy and sexuality from the perspectives of patients and health professionals in cancer and palliative care. A 3-stage reflexive inquiry involved semistructured participant interviews (n = 82), textual analysis of national and international clinical practice guidelines (n = 33), and participant feedback at 15 patient and health professional educational forums. This article will present the analysis of 50 patient interviews, which showed 5 clusters of responses to a cancer diagnosis: "focus on survival," "trust in health professional," "desire for choices," "search for normality," and "need for negotiated communication." Most patients were searching for a reflexive, patient-centered and negotiated style of communication from the health professional of their choice, at a time and in a manner that suited their individual needs. Many patients were disappointed by the lack of information, support, and practical strategies provided by health professionals to assist them to live with the sexual and intimate changes they had experienced in the face of a life-limiting disease. Implications for nursing practice are discussed.     

Cancer pain: voices of the Ojibway people

Recognition of the integration of sensory dimensions of pain with cultural factors has the potential to improve the quality of the clinical encounter between those in pain and their health care providers. This qualitative study used a grounded theory approach to describe the conceptualization of cancer pain from 18 Ojibway patients, family caregivers, and healers/medicine men from a Reserve community and 13 health professionals (nurses and physicians) from a hospital adjacent to this Reserve. Results revealed that for Ojibway participants, cancer pain epitomized all that was most painful in life. Unlike health professionals, they described the properties of pain as a seamless intertwining of the dimensions of physical sensation, threatening cognitions, emotional, social and spiritual anguish, and intuitive sensing. These Ojibway voices on cancer pain remind us of the interrelatedness of culture in the construction of pain and caution us to broaden the restricted focus we bring to the clinical encounter.     

Development, Implementation, and Process Evaluation of a Regional Palliative Care Quality Improvement Project

The delivery of optimal palliative care requires an integrated and coordinated approach of many health care providers across the continuum of care. In response to identified gaps in the region, the Palliative Care Integration Project (PCIP) was developed to improve continuity and decrease variability of care to palliative patients with cancer. The infrastructure for the project included multi-institutional and multisectoral representation on the Steering Committee and on the Development, Implementation and Evaluation Working Groups. After review of the literature, five Collaborative Care Plans and Symptom Management Guidelines were developed and integrated with validated assessment tools (Edmonton Symptom Assessment System and Palliative Performance Scale). These project resources were implemented in the community, the palliative care unit, and the cancer center. Surveys were completed by frontline health professionals (defined as health professionals providing direct care), and two independent focus groups were conducted to capture information regarding: 1) the development of the project and 2) the processes of implementation and usefulness of the different components of the project. Over 90 individuals from more than 30 organizations were involved in the development, implementation, and evaluation of the PCIP. Approximately 600 regulated health professionals and allied health professionals who provided direct care, and over 200 family physicians and medical residents, received education/training on the use of the PCIP resources. Despite unanticipated challenges, frontline health professionals reported that the PCIP added value to their practice, particularly in the community sector. The PCIP showed that a network in which each organization had ownership and where no organization lost its autonomy, was an effective way to improve integration and coordination of care delivery.     

中国癌症疼痛现状调查中国医务人员对癌痛治疗态度、知识、实践情况的调查

采用“医务人员对癌症疼痛认知及临床治疗情况调查表”,对全国２９个省、区、市各级医疗卫生机构的医药卫生专业人员进行了调查。结果表明：在癌痛治疗基本知识、态度方面,２７３名参加过癌痛治疗培训的专业人员癌痛基本知识平均得分分值为９．２７±１．６７,显著高于未参加过培训人员６．８４±２．５４的平均分值（ｔ＝１４．２３,Ｐ＜０．０５）;在癌痛治疗现状上,分别有３５．６％、３７．０％和２６．８％的人认为目前癌痛患者中的７０％以上、约５０％和３０％以下得到了必要的止痛药治疗,而认为基本达到ＷＨＯ三级止痛治疗阶梯目标的仅占所有应答者的１７．１％;在有效癌痛治疗的障碍因素上,医务人员、患者的“恐瘾”心理和麻醉性镇痛药管理过严是主要障碍因素。     

Barriers in providing psychosocial support for patients with cancer

There is sound evidence to support the notion that the provision of effective psychosocial care improves the outcomes of patients with cancer. Central to the implementation of this care is that health professionals have the necessary communication and assessment skills. This study aimed to identify key issues related to providing effective psychosocial care for adult patients admitted with hematological cancer, as perceived by registered nurses with 3 or more years of clinical experience. An exploratory qualitative design was used for this study. Two focus group interviews were conducted with 15 experienced cancer nurses. The provision of psychosocial care for patients with cancer is a dynamic process that has a professional and personal impact on the nurse. The 5 analytic themes to emerge from the data were as follows: When is it a good time to talk? Building relationships; Being drawn into the emotional world; Providing support throughout the patient's journey; and Breakdown in communication processes. The findings from this study indicate an urgent need to develop a framework to provide nurses with both skill development and ongoing support in order to improve nurses' ability to integrate psychosocial aspects of care and optimize patient outcomes.     

Lung cancer, caring for the caregivers. A qualitative study of providing pro-active social support targeted to the carers of patients with lung cancer

INTRODUCTION: Carers of patients with lung cancer often have a short time to access the support they require. The Macmillan Carers Project (MCP) was set up to provide non-clinical social support targeted in the community to the carers of patients with lung cancer and this study describes its evaluation. METHODS: Prospective case study using interviews with the carers, project workers and health and social care professionals to obtain qualitative data for thematic analysis. 81 patients' carers received support from the MCP; 20 carers, 2 MCP workers and their manager and 10 other professionals (chest consultant physician, lung cancer clinical nurse specialist, GP, four Macmillan nurses, hospice social worker and two community social workers) were interviewed. RESULTS: Patients were predominantly male (62%), mean age 71 years and carers were predominantly female (70%) mean age 63 years. Carers identified the MCP as providing emotional support, more time, practical help, financial advice, information and back-up for a myriad of problems. Although there was some overlap with other services, the MCP was valued by carers and professionals as filling a gap in social care. CONCLUSIONS: The unique aspect of this study was support targeted to the carers of a single cancer site (lung) rather than generic cancer support. As lung cancer may progress rapidly, patients and their carers have a short time to gather new information, access services and adjust to their new circumstances and roles. By focusing on the needs of carers from the time of lung cancer diagnosis, we have shown that the MCP was a valued additional service, well received by carers, patients and professionals.     

Interprofessional care review with medical residents: Lessons learned,tensions aired – A pilot study

Integrated interprofessional care teams are the focus of Canadian and American recommendations about the future of health care. Keeping with this, a family medicine teaching site developed an educational initiative to expose trainees to interprofessional care processes and learning (Interprofessional Care Review; IPC). A formative evaluation pilot study was completed using one-on-one interviews and a focus group (n?=?6) with family medicine residents. A semi-structured guide was utilized regarding: knowledge, skills and attitudes related to interprofessional care; their experience of the processes utilized in IPC. Data were analyzed using content analysis. Residents' perspectives on their learning revolved around four themes: changes to understanding and practice of interprofessional care; personal impact of IPC; learning about other health professionals; tension and challenges of IPC learning and clinical implementation. Residents valued the educational experience, but identified that faculty supervisors provided “mixed messages” in the value of collaborating with other health professionals. Implications regarding future educational and research opportunities are discussed.     

Mental health: integrated network and family-oriented model for co-operation between mental health patients, adult mental health services and social services

Background. Co‐operation between mental health care units and the social services is important in the case of people with social problems who also suffer from mental health problems. However, participation of patients and their families in the treatment process, and co‐operation between them and the professionals, are also important. Communication between the professionals, patients and their family members, and the professionals is a crucial factor for co‐operation. Aims and objectives. The aim of this study was to elucidate the experiences and importance of co‐operation for the patients. The data consisted of interviews with 22 mental health patients who were also clients of municipal social services. Method. The grounded theory approach was used, focusing on the informants’ experiences of the integrated network and family‐oriented model for co‐operation. Results. The findings indicate the importance of the participation of patients and their social networks in psychiatric care or the treatment process. Meetings should be characterized by open and reflexive discussions with all participants’ points of view being included, so that fruitful co‐operation is possible. However, some negative experiences were also reported, all of which were connected with the professionals’ behaviour. Conclusions. Trust and honesty are essential elements in relations between professionals and psychiatric patients, but it cannot be assumed that they will develop naturally. It is the professionals’ responsibility to adjust their behaviour so that these elements can be created in a mutual process between patients and professionals. Multidisciplinary teams are a necessity in family‐oriented co‐operation between psychiatry and social services, and in a satisfactory caring process. Relevance to clinical practice. Nurses’ work is often individually oriented and nurses are ruled by routines in their work. The mental health caring process should be seen as a shared process between the patient, his/her human environment and professionals for which nurses need skills to their interaction with patients and their social network.     

Biofield therapies and cancer pain

The public and healthcare professionals have become increasingly aware and accepting of the benefit in physical, psychological, social, and spiritual support for patients with cancer. Patients with cancer often seek nonpharmacologic interventions to complement conventional care and decrease the pain associated with cancer and its treatment. Most often referred to as complementary and alternative medicine (CAM), these supportive therapies consist of a heterogeneous group of modalities used as adjuncts to allopathic health care. Biofield therapies are CAM modalities that involve the direction of healing energy through the hands to facilitate well-being by modifying the energy field of the body. This critical review of studies of biofield therapies emphasizes research using these modalities to decrease pain in patients with cancer. Although the therapies have demonstrated clinical efficacy, additional research is warranted. Oncology nurses should familiarize themselves with biofield therapies so they can offer informed recommendations to patients with cancer experiencing pain.     

Supportive Roles of the Health Care Team Throughout the Illness Trajectory of Bladder Cancer Patients Undergoing Radical Cystectomy: A Qualitative Study Exploring the Patients’ Perspectives

ObjectivesTo explore patient perspectives of muscle-invasive bladder cancer (MIBC) on how the health care team and their social network can support them during their cancer trajectory.Data sourcesSixteen semi-structured interviews were conducted with MIBC survivors who underwent radical cystectomies at Ghent University Hospital. The interviews were audiotaped, transcribed verbatim, and analyzed with an iterative content analysis approach.ConclusionInformation to support people affected by bladder cancer (BC) in several aspects of their disease trajectory (eg, shared decision-making and self-management of their urinary diversion) was most important throughout the interviews (although type and source of required information varied). The clinical nurse specialist was important for informational and emotional support because receiving sufficient information might help patients reduce emotional stress. People affected by BC are still reluctant to consult a psychologist, and several barriers were indicated for this. Also physical needs in the early postoperative phase could be reduced with appropriate information. Communication skills of clinicians in the hospital and knowledge of general practitioners about the important aspects of BC care are also important aspects that should be further optimized. Furthermore, peer support groups and family members can offer important support throughout the BC pathway.Implications for Nursing PracticeThis study provides an overview of how people affected by BC want to be supported by their health care team and their social network. This overview can serve as a basis to develop educational interventions for both patients and health care professionals to guide restructuring of BC pathways and can also be used to develop future intervention studies to improve BC outcomes.     

Family caregivers of palliative cancer patients at home: the puzzle of pain management

The purpose of this grounded theory study was to understand the processes used by family caregivers to manage the pain of cancer patients at home. A total of 24 family caregivers participated. They were recruited using purposeful then theoretical sampling. The data sources were taped, transcribed (semi-structured) interviews and field notes. Data analysis was based on Strauss and Corbin's (1998) requirements for open, axial, and selective coding. The result was an explanatory model titled "the puzzle of pain management," which includes four main processes: "drawing on past experiences"; "strategizing a game plan"; "striving to respond to pain"; and "gauging the best fit," a decision-making process that joins the puzzle pieces. Understanding how family caregivers assemble their puzzle pieces can help health care professionals make decisions related to the care plans they create for pain control and help them to recognize the importance of providing information as part of resolving the puzzle of pain management.     

Cancer-related pain in palliative care: patients' perceptions of pain management

BACKGROUND: Pain is still a significant problem for many patients with cancer, despite numerous, clear and concise guidelines for the treatment of cancer-related pain. The impact of pain cognition on patients' experiences of cancer-related pain remains relatively unexplored. AIM: The aim of this study was to describe how patients with cancer-related pain in palliative care perceive the management of their pain. METHOD: Thirty patients were strategically selected for interviews with open-ended questions, designed to explore the pain and pain management related to their cancer. The interviews were analysed using a phenomenographic approach. FINDINGS: Patients described 10 different perceptions of pain and pain management summarized in the three categories: communication, planning and trust. In terms of communication, patients expressed a need for an open and honest dialogue with health care professionals about all problems concerning pain. Patients expressed an urgent need for planning of their pain treatment including all caring activities around them. When they felt trust in the health care organization as a whole, and in nurses and physicians in particular, they described improved ability and willingness to participate in pain management. While the findings are limited to patients in palliative care, questions are raised about others with cancer-related pain without access to a palliative care team. CONCLUSION: The opportunity for patients to discuss pain and its treatment seems to have occurred late in the course of disease, mostly not until coming in contact with a palliative care team. They expressed a wish to be pain-free, or attain as much pain relief as possible, with as few side effects as possible.     

Testing two accounts of pain underestimation

Two important influences on pain underestimation by health care professionals were investigated by varying specific cues with reference to underestimation of patients' pain: when observers are not allowed to talk to patients and when observers expect social cheating. One hundred and twenty health care professionals watched videotaped facial expressions of pain patients and estimated their pain. The first group only saw the faces, the second group was given patients' self-reports in addition and the last group was given a context cue priming them to expect cheating in addition to faces and patients' ratings. Health care professionals generally underestimated patients' pain, but this varied depending on the cues given. Those viewing the face without patients' ratings underestimated pain to a greater extent than health care professionals provided with patients' ratings. Health care professionals primed to expect cheating underestimated pain as much as those seeing only patients' faces. Therefore, both accounts, verbal report as important but missing cue as well as an alerted cheating detection device, could account for underestimation.     

Understanding culture and culture management in the English NHS: a comparison of professional and patient perspectives

Rationale and objectives The growing interest in patient‐focused health care in the National Health System (NHS), especially in the wake of high‐profile failures in clinical practice, has underlined the need to involve patients in the design and evaluation of organizational change management programmes at the local level. This includes an evaluation of the relevance of culture and how culture might be assessed and managed in the delivery of high‐quality and safe care. The purpose of this study is to compare and contrast the perspectives of health care professionals and patient representatives on purposeful attempts to manage culture change in the English NHS. Methods We used the mixed approach, but with more quantitative than qualitative data. A postal questionnaire survey of clinical governance leads and patient representatives from 276 NHS trusts was followed up with a focus group discussion of eight of the survey participants and semi‐structured interviews with 18, including health care professionals and patient representatives from various organizations. We used spss to analyse the survey data and Atlas.ti to analyse the qualitative data. Results and conclusions Both clinical governance leads and patient representatives considered culture management and change to be integral to quality and safety improvement efforts. However, clinical governance leads were more positive than patient representatives about anticipated results from ongoing efforts to manage culture change at the local level. Further, in spite of general agreement on various attributes for culture assessment efforts, there was a striking difference in the level of importance respondents attached to blame free (more important to clinical governance managers) and customization (more important to patient representatives).