The experiences of adults who are on dialysis and waiting for a renal transplant from a deceased donor: a systematic review.

Kidney transplantation has been recognized as the best renal replacement therapy option for people with end stage renal disease. With an estimated 170,000 people waiting for a kidney transplant around the world and a limited supply of donor organs, the waiting time is often prolonged for many years. The aim of this review was to examine the existing evidence of patients' experiences of living on dialysis and waiting for a renal transplant from a deceased donor. This review considered studies that included adult patients aged 18 years and over who had been on dialysis (hemodialysis or peritoneal dialysis) for up to 15 years and who were waiting for a renal transplant from a deceased donor. Types of intervention(s)/phenomena of interest: The phenomena of interest were the experiences of adults waiting for a renal transplant from a deceased donor and more specifically, the impact of waiting on their lifestyle and day to day living. Types of studies: This review considered studies that focused on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research. Types of outcomes: This review considered studies that included the experiences of people who were waiting on dialysis for a kidney transplant from a deceased donor. The search strategy aimed to find both published and unpublished studies through electronic databases, reference list searches and the World Wide Web. Extensive searches were undertaken of the CINAHL, Embase, Medline and PsychInfo databases of published literature, the Cochrane Database of Systematic Reviews and the Virginia Henderson International Nursing Library, OpenGrey and the New York Academy of Medicine databases of unpublished literature. Each study was assessed for methodological quality by two independent reviewers using the Joanna Briggs Institute Qualitative Assessment and Review Instrument checklist. Disagreements between the reviewers were resolved through discussion or with a third reviewer. Qualitative data was extracted from papers included in the review using the standardized data extraction tool from JBI-Qualitative Assessment and Review Instrument. Qualitative research findings were pooled to generate a set of statements that represented the aggregation and categorizing of these findings on the basis of similarity in meaning. These categories were then subjected to a meta-synthesis in order to produce a comprehensive set of synthesized findings that can be used as a basis for evidence-based practice. A total of 12 studies were included in the final review. Thirty-seven findings from the 12 studies were extracted and aggregated into 11 categories and then into three synthesized findings. The three synthesized findings were: 1. People who are waiting for a kidney transplant from a deceased donor are affected by the experience of living on dialysis with end stage renal disease and its impact on their physical health and normal activities of living. 2. The experience of waiting for a kidney transplant from a deceased donor impacts a person's psychological wellbeing. 3. People who are waiting for a kidney transplant from a deceased donor place value on relationships and being part of a community. The experience of waiting for a renal transplant from a deceased donor while living on dialysis with end stage renal disease changes a person's relationships. Synthesized findings of the review conclude that people who are waiting for a kidney transplant from a deceased donor live with the physical effects of a life limiting chronic illness and dialysis therapy. Waiting for a kidney transplant is psychologically challenging. People waiting for a kidney transplant value knowledge, although the information they require to alleviate the uncertainty they feel is not available. The dynamics of relationships with family and friends are affected by the experience of waiting for a kidney transplant. People can feel isolated from others leading a 'normal' life, while new relationships are developed within the medical team and community of dialysis patients. There is limited evidence from the review to support the development of recommendations for clinical practice. Healthcare workers caring for people who are waiting for a kidney transplant from a deceased donor should be mindful of the physical and lifestyle effects of living on dialysis with end stage renal disease. Wherever possible, information should be provided to alleviate the stress and anxiety related to the uncertainty of waiting. The experience of waiting is stressful and people waiting for a kidney transplant may require support and reassurance. It is important to recognize that there are people within communities who may also benefit from receiving information and encouragement. Significant community members should be included in invitations to appointments and education sessions with the consent of the person being treated. Future studies should be undertaken exclusively with people waiting for a kidney transplant from a deceased donor. Qualitative research designs such phenomenology and grounded theory could be used to investigate the psychological experience of waiting and the relationship between hope, uncertainty and knowledge. Quantitative studies using validated tools could also be conducted. By producing more evidence relating to this significant specific patient population, interventions to improve the experience of waiting could be developed and trialed.

Burns T ，Fernandez R ，Stephens M 《-》

The experience of adults who choose watchful waiting or active surveillance as an approach to medical treatment: a qualitative systematic review.

Rittenmeyer L ，Huffman D ，Alagna M ，Moore E ... -  《-》

Health professionals' experience of teamwork education in acute hospital settings: a systematic review of qualitative literature.

Teamwork is seen as an important element of patient care in acute hospital settings. The complexity of the journey of care for patients highlights the need for health professionals to collaborate and communicate clearly with each other. Health organizations in western countries are committed to improving patient safety through education of staff and teamwork education programs have been integral to this focus. There are no current systematic reviews of the experience of health professionals who participate in teamwork education in acute hospital settings. The objective of this systematic review was to search for the best available evidence on the experiences of health professionals who participate in teamwork education in acute hospital settings. This review considered studies reporting on experiences of registered health professionals who work in acute hospitals. This included medical, nursing and midwifery and allied health professionals. The focus of the meta-synthesis was the experiences and reflections of health professionals who were involved in teamwork education in acute hospital settings. The geographical context for this review was acute hospitals in rural or metropolitan settings in Australia and overseas countries. The review focused on the experiences of health professionals who work in acute hospitals and participated in teamwork education programs. This review considered studies that focused on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research.In the absence of research studies, other text such as opinion papers, discussion papers and reports were considered. Studies published in English and from 1990 to 2013 were included in this review. The literature search for relevant papers occurred between 13 September and 26 October 2013. A three-step search strategy was utilized in this review. The databases searched were PubMed, CINAHL, Embase and Scopus. The standardized critical appraisal tool the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) was used to assess the methodological quality of included papers. Data that included statements and text of interest was extracted from papers included in the study using the standardized data extraction tool from JBI-QARI. Qualitative research findings were pooled using JBI-QARI. This involved the aggregation and synthesis of findings to generate a set of statements that represented that aggregation. In total, 116 papers were selected for analysis of full text, 11 papers were selected for critical appraisal and seven papers were selected for data synthesis. This resulted in 44 findings. The findings were assigned to 16 categories based on identified similarities across the papers. The categories were integrated into six meta-syntheses. These were: Meta-synthesis One: It is important to recognize that organizational culture and expectations have an impact on health professionals' participation and experience of teamwork education. Meta-synthesis Two: Understanding how successful teams function is central to the development of teamwork education programs and the experience of participants. Meta-synthesis Three: A health professional's experience of teamwork education will be influenced by his/her starting point of learning. Meta-synthesis Four: Participants highly value teamwork education programs that are implemented by facilitators who create practical authentic learning opportunities and foster reflection and debriefing for participants. Meta-synthesis Five: High fidelity simulation used with specific communication strategies provides a powerful learning opportunity for health professions to practice teamwork skills. Meta-synthesis Six: Participants have increased confidence and are motivated to apply their newly learnt teamwork skills into their daily practice. The review identified qualitative evidence that can guide organizations and education facilitators in the development and implementation of teamwork education in acute hospital settings. Although the quality of the specific teamwork education programs was an important factor, there were a number of issues that also impacted on the experiences of health professionals who participated in teamwork education programs. These included the context that the program was delivered in, the diversity of health care teams, starting points of individual learners, the type of tools utilized in education programs, the levels of confidence and motivation of learners post training and the opportunity to transfer into practice new learning. Drawing from the synthesized findings of the review, recommendations for practice have been devised in order to guide the development and implementation of teamwork education in acute hospital settings and to improve the experience of participating health professionals. The Joanna Briggs Institute utilizes Grades of Recommendation to rate a health management strategy in terms of its desirable effects, evidence of adequate quality supporting its use, benefits of use, and the inclusion of patient experience, values and preferences. A strong recommendation has a Grade A and a weak recommendation has a Grade B. The FAME (Feasibility, Appropriateness, Meaningfulness and Effectiveness) scale was used to inform the strength of the following six recommendations for practice from the review: RECOMMENDATION ONE: All members of a team should be encouraged by their organization/managers to participate in teamwork education programs in order to foster a positive culture of learning and teamwork within the team.JBI Recommendation: Grade A. This recommendation is appropriate and applicable to all health professionals in acute hospital settings, is associated with positive experiences for participants of teamwork education programs and has a beneficial effect on participants. Facilitators of teamwork education programs should understand how successful teams function and consider these factors when planning or delivering training.JBI Recommendation: Grade A. This recommendation is associated with positive experiences for participants and creates a beneficial effect to the quality of a teamwork education program. Facilitators of teamwork education programs need to explore participant learning needs and their prior experiences of working in teams before implementing teamwork education programs.JBI Recommendation: Grade A. This recommendation creates a beneficial effect to the participants of teamwork education programs and to the quality of education provided by facilitators. Facilitators of teamwork education programs should provide learning opportunities that are practical, authentic to participants and foster constructive debriefing and reflection.JBI Recommendation: Grade A. This recommendation is applicable to all health professionals and circumstances in which teamwork education occurs, is associated with positive experiences and has a beneficial effect on participants. High fidelity simulation should be considered in acute hospitals for the training of teamwork skills in addition to clinical skills. Scenarios provide realistic opportunities for participants to practice communication strategies that enhance teamwork.JBI Recommendation: Grade A. This recommendation is applicable to all health professionals and circumstances in which teamwork education occurs and has a beneficial effect on participants of education programs. Team managers should harness the new confidence and motivation of staff around teamwork skills following participation in teamwork education programs and ensure that there are opportunities in the workplace to apply new skills and knowledge into daily practice.JBI Recommendation: Grade A. This recommendation is applicable to all health professionals and circumstances in which teamwork education occurs, is adaptable to a variety of circumstances and has a beneficial effect on health professional's daily practice of teamwork skills. In order to strengthen the evidence base about teamwork education in acute hospital settings there needs to be quantitative and qualitative research into:How organizations that have successfully embedded a culture of collaboration and safety in health teams have planned, implemented and evaluated teamwork education programs in acute hospital settings?What are the characteristics of teams that have led to successful participation in teamwork education and positive outcomes for team performance?What are the experiences, training and support provided to education facilitators who successfully implement teamwork education programs in acute hospitals?

Eddy K ，Jordan Z ，Stephenson M 《-》

Promoting and supporting self-management for adults living in the community with physical chronic illness: A systematic review of the effectiveness and meaningfulness of the patient-practitioner encounter.

There has been a reported rise in the number of people with chronic illness (also referred to as long-term disease) in the Western world. One hundred million people in the United States have at least one chronic condition and in the United Kingdom (UK) as many as 17.5 million adults may be living with chronic disease. New models of care have been developed which recognise the complexities of managing care where there is overlap between the wider community, the health care system and provider organisations, for example, the Chronic Care Model and the Expert Patient Programme. These new models herald a shift away from the idea of chronically ill patients as passive recipients of care towards active engagement, in partnership with health professionals, in managing their own care.Partnership, ideally, involves collaborative care and self-management education. This may support self-care alongside medical, preventative and health maintenance interventions. In this context the nature of the patient-practitioner consultation in promoting self-care takes on a new importance. The overall objective of the review was to determine the best available evidence regarding the promotion and support of self-care management for adults living in the community with chronic illness during the patient-practitioner encounter. Specifically the review sought to determine: What is the effectiveness of the patient-practitioner encounter in promoting and supporting self-care management of people with chronic illness? What are the individual and organisational factors which help or hinder recognition, promotion and support of chronic disease self-care management strategies? What are the similarities and differences between how 'effectiveness' is defined in this context by patients and different practitioners? The review focussed on self-caring adults aged nineteen years and older living in the community, with a physical chronic illness, and not currently being treated as an in-patient. For example, people with diabetes, asthma, arthritis, coronary disease, lung disease, heart failure, epilepsy, kidney disease and inflammatory bowel disease. Since patients meet various professionals in a variety of community settings regarding their care, a practitioner in this review included doctors (physicians and General Practitioners), nurses, nurse specialists, dieticians, podiatrists and community health workers.A variety of outcomes measures was used to evaluate effective self-care management. These included physiological measurements such as: HbA1c, blood pressure, body weight, lipids; lifestyle measurements, for example physical activity; and self-care determinants such as knowledge, attitude; and self-care behaviours regarding, for example, diet and physical exercise, and medication. The outcome measures used to explore the meaningfulness of the patient-practitioner encounter, concerned patients', physicians' and nurses' views and perceptions of self-care management and support.The review considered all types of quantitative and qualitative evidence regarding the patient-practitioner encounter where self-care in chronic illness was the focus. The quantitative studies reviewed included systematic reviews, randomised controlled trials (RCTs), quasi-experimental studies, and survey studies.Qualitative studies reviewed included interview designs, vignette technique, qualitative evaluation, grounded theory, and exploratory descriptive design. The search sought to find both published and unpublished studies between 1990 and 2005. The year 1990 was deemed appropriate since it precedes the development of the Chronic Care Model in which self-management support for people living with chronic illness is heralded as an important part of care-management. An initial search of CINAHL and MEDLINE databases was undertaken to identify appropriate search terms regarding self-care and chronic illness. A search strategy was then developed using all identified MeSH headings and key words and the following databases were searched: - Ovid CINAHL; Ovid MEDLINE (R); Ovid EMBASE; Ovid EBM Reviews (CDSR, ACP Journal Club, DARE, CCTR); ASSIA; SIGLE; Digital Dissertations; and British Library's Zetoc Services. Thirty-two papers were considered applicable to the review topic from the title and abstract. Two reviewers used the appropriate critical appraisal instruments designed by the Joanna Briggs Institute (JBI) to assess methodological quality of papers retrieved for review, and agreed on the papers for inclusion. A total of 18 papers reporting 16 studies were included in the review (3 papers reported from the same study): 12 quantitative studies, 5 qualitative studies and 1 study using mixed methods. These papers were heterogeneous in nature, diverse in subject matter and considered a wide range of physiological, psychological, sociological and behavioural self-care outcome measures. Data were extracted by the two independent reviewers using a variety of data extraction instruments developed by JBI. The heterogeneous nature of the quantitative studies prevented meta-analysis and so these studies are presented in narrative summary. Meta-synthesis of the qualitative data was performed for the six qualitative pieces following the process of meta-synthesis set out in the JBI-QARI software package. The process of meta-synthesis embodied in this programme involves the aggregation or synthesis of findings. Seven syntheses were produced from fifty findings. For effective patient-centeredness to be established patients should be able to discuss their own ideas about self-care actions, including lifestyle management in an unhurried fashion and with a practitioner who has the time and who is willing to listen. Patient-centred interventions aimed at providers such as patient-centred training and patient-centred materials were shown to have a positive effect on the patient-centeredness of an encounter, but their effect on self-care outcomes was not clear. Interventions directed at enhancing patient participation in the encounter were shown to effect diabetes self-care and self-behaviour.Nurses were shown to have an effective role in educating patients and facilitating adherence to treatment. Patients found nurses approachable and some studies showed that when given the choice, patients were more likely to contact a nurse (than a doctor) regarding their care.Professional interventions such as education, and organisational interventions such as management of regular review and follow up, were shown to improve process outcomes in the management of a patient-practitioner encounter. When patient-orientated interventions were added to professional and organisational interventions, in which patient education and / or the role of the nurse was enhanced, patient health outcomes were improved.The different patient-orientated interventions reviewed highlighted some of the elements that can effectively support self-care management during a patient-practitioner encounter. These are information giving, including the use of a guidebook, the use of care plans, the structure of treatment using checklists, and education and support for staff in 'collaboratives'.Comprehensive, well-paced, user-friendly information is effective in supporting and promoting self-care management in a variety of ways. It informs and reassures patients and their families. It can be used during a doctor/patient consultation to assist communication between doctors and patients, and may help patients feel more involved in their care.For information to effect self-care management, it is important that it is given at diagnosis and from then onwards so that the implications of good self-care management in relation to long term health outcomes are established.Care plans and self-management plans can be useful in facilitating patients' discussion of self-care actions and lifestyle management.Organisational factors affect opportunities for professionals to support patient self-care management. These include time, resources, the existing configuration and expectations of a consultation, the opportunity for open access to appointments, the ability to see the same doctor and early referral to other professional groups.Correlational design studies indicated that individual psychological factors, such as attachment style and autonomy support given to a patient during a patient-practitioner encounter, have a relationship to self-care behaviours and outcomes.Correlational design studies indicated that both general communication and diabetic specific communication used during a patient-practitioner encounter have a positive effect on patient self-care management and outcomes for patients with diabetes.Consultations about self-care for patients with chronic illness tend to be medically focussed and do not always include discussion of patients' views of the routines and self-care actions. This can lead to tension and unresolved issues between the patient and professional.Studies in the context of diabetes self-management reveal that professionals can effectively support patients in a number of ways. These include assisting the orientation of patients towards skills and competencies needed for self-care; sharing knowledge and information; endorsing the patient's view that he or she is the most reliable and accurate source of information about his or her physiological function; trusting the patients' interpretations of their physiological function, and modifying advice in response to patients in accordance with their bodily cues and experiences. The nature of the patient-practitioner encounter is multifaceted involving patient, professional and organisational factors. Patient-orientated interventions are the most effective in effecting positive self-care behavioural and health outcomes. Patient participation in the patient-practitioner encounter is a key factor in influencing self-care outcomes. Patients' self-care management involves social as well as medical management. Professionals need to recognise and value patients' views and experiences in order to support their self-care management. Patients need information at diagnosis and from then onwards to enable good self-care management. It is important to enable patient participation during the patient-practitioner encounter.For patients' self-care needs to be addressed opportunities for patients to talk about their diet, routines and lifestyle management need to be incorporated into the encounter. Extra time in consultations may be required. Care plans can help to facilitate this discussion.To support patients with their self-care management, both sharing of medical and nursing knowledge, and recognition of the value of patient's knowledge and experiences are vital.Nurses relate well to patients who want to discuss self-care management.Professional interventions and organisational interventions can improve the management of a patient-practitioner encounter. Patient-orientated interventions in addition to good management of the encounter can improve health care outcomes. Patient focussed interventions have a positive effect on patient self-care outcomes. Further research regarding patients' self-care and health outcomes and behaviours is needed to establish which patient focussed interventions in particular are effective.Qualitative research has proved to be important in understanding the different ways that professionals and patients approach self-care management during an encounter. More qualitative research would assist an understanding of the processes that inspire effective partnership between patients and professionals to support the establishment of self-care management of chronic illness.

Rees S ，Williams A 《-》

The experiences of family members in the year following the diagnosis of a child or adolescent with cancer: a qualitative systematic review.

Research shows that it is stressful for family members when a child or an adolescent within the family unit is diagnosed with cancer and this stress continues over the course of the year after the diagnosis. Qualitative studies have been conducted aimed at exploring parental, siblings' and other family members' experiences when facing health-illness transition-related stress during the first year after the child is diagnosed with cancer. This study integrates the research findings of relevant existing qualitative studies on this topic in order to provide empirical evidence-based suggestions for clinical care. This study intent is to obtain an understanding of the family members' experiences over the course of the following year after learning that a child or adolescent within their family unit has been diagnosed with cancer. The participants of interest are family members of a child or adolescent with cancer who verbally describe the whole experience and/or report on the impact of the diagnosis and disease on their lives. In this systematic review, there were no restrictions on the type, severity and prognosis of cancer. Studies investigating the experiences of the family of a child or adolescent with cancer that were reported verbally and the opinions of others external to the family (e.g. nurses) were excluded from the review. The phenomena of interest were the self-reported experiences over the course of the following year of family members of a child or adolescent with cancer and the impact on the whole family of the child or adolescent receiving a cancer diagnosis. The settings included acute care, home and community settings with any cultural context. Research on other phenomena, such as experiences related to social support intervention for the family, the long-term coping experience of the family, the bereavement experiences of children with cancer, the experiences of a child or adolescent with cancer and experiences more than one year after the diagnosis was excluded from the review. Types of studies: This review considered studies that used qualitative methods to examine the experiences of families of a child or adolescent with newly diagnosed cancer; these included but were not limited to designs such as qualitative research, phenomenology, hermeneutic phenomenology, grounded theory, ethnography, action research, focus groups and narrative research. The search was limited to studies published in English or Chinese because the reviewers were fluent in both of these languages. The search strategy sought to find both published and unpublished studies. CINAHL, PUBMED, ProQuest Dissertations and Theses and Chinese electronic periodical services were used to search for articles. Each paper was assessed independently by two reviewers for methodological quality. The Joanna Briggs Institute Qualitative Assessment and Review Instrument was used to appraise the methodological quality of the articles. Any disagreements that arose between the reviewers were resolved through discussion, or via a third reviewer. Qualitative data were extracted from papers for inclusion in the review using the standardized data extraction tool from JBI-QARI. Qualitative research findings were extracted and pooled using JBI-QARI. A total of eight qualitative papers were included in the review (two grounded theory, four phenomenology and two qualitative inquiries). Five syntheses were derived: (1) family loss and the turmoil that surrounds the diagnosis of cancer; (2) a sense of courage and hope for mutual responsibility inspired by the changes in circumstances; (3) family support enhancing family members’ resilience; (4) health professional-patient communication that provide a deeper understanding of the illness and their own situations; and (5) a positive attitude towards the illness and planning for the future. The research findings should help health professionals understand the nature of the experiences of family members of a child or adolescent with cancer. It is critical to assess the family member’s level of preparedness in the face of the psychological stress associated with the potential loss of their healthy child. Health professionals should enhance family coping strategies in order to promote normal family life. This can be done by inspiring positive attitudes and empowerment aimed at caring for the child and helping the family to build the necessary health-related communication capacities in order to clarify the child’s condition. Clinical guideline suggestions for health professionals working with families of children or adolescent diagnosed with cancer within the first year following the diagnosis were identified. Health professionals must listen to and accept the emotions of shock, anger and loss by the family members who are facing the potential loss of their healthy child together with the upheaval in their lives and disruptions to their plans for the future. Health professionals should be encouraged to provide clear information to the whole family in relation to the treatment plan and caring strategies for the child. Nurses should provide family members with strategies to help with the normalization of their life and a return to their previous pre-cancer lifestyle. The medical team should exhibit professionalism and skills when treating the cancer in order to enhance the child’s and his/her family members’ trust and sense of safety in the medical care environment. Encouraging the family members of children with cancer to develop positive thinking and to plan for their future life should be a priority of the nursing care plan.

Mu PF ，Lee MY ，Sheng CC ，Tung PC ，Huang LY ，Chen YW ... -  《-》