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Background: Health-related decision-making is a complex process given the variability of treatment options, conflicting treatment plans, time constraints and variable outcomes. This complexity may result in patients experiencing decisional regret following decision-making. Nonetheless, literature on decisional regret in the healthcare context indicates inconsistent characterization and operationalization of this concept., Aim(s): To conceptually define the phenomenon of decisional regret and synthesize the state of science on patients' experiences with decisional regret., Design: A concept analysis., Methods: Rodgers' evolutionary method guided the conceptualization of this review. An interdisciplinary literature search was conducted from 2003 until 2023 using five databases, PubMed, CINAHL, Embase, PsycINFO and Web of Science. The search informed how the concept manifested across health-related literature. We used PRISMA-ScR checklist to guide the reporting of this review., Results: Based on the analysis of 25 included articles, a conceptual definition of decisional regret was proposed. Three defining attributes underscored the negative cognitive-emotional nature of this concept, post-decisional experience relating to the decision-making process, treatment option and/or treatment outcome and an immediate or delayed occurrence. Antecedents preceding decisional regret comprised initial psychological or emotional status, sociodemographic determinants, impaired decision-making process, role regret, conflicting treatment plans and adverse treatment outcomes. Consequences of this concept included positive and negative outcomes influencing quality of life, health expectations, patient-provider relationship and healthcare experience appraisal. A conceptual model was developed to summarize the concept's characteristics., Conclusion: The current knowledge on decisional regret is expected to evolve with further exploration of this concept, particularly for the temporal dimension of regret experience. This review identified research, clinical and policy gaps informing our nursing recommendations for the concept's evolution., No Patient or Public Contribution: This concept analysis examines existing literature and does not require patient-related data collection. The methodological approach does not necessitate collaboration with the public., (© 2024 John Wiley & Sons Ltd.)

Aim: To develop a grounded theory of the patients' experiences with patient-controlled admission., Background: Research indicates a potential for involving patients in mental health care, but there is a need to develop and investigate new approaches in health services. Patient-controlled admission is an option for patients with severe mental disorders to refer themselves for a brief hospital admission when needed and thus avoid the usual admission procedure., Design: Classic grounded theory with generation of a theory based on the constant comparative method for data collection and analysis., Methods: Field observations and interviews with 26 mental health patients. The COREQ checklist was followed., Results: We found that patient-controlled admission induced safety by providing faster access to help and thus preventing further deterioration of symptoms. Being self-determined, achieving calmness and receiving care with support and guidance from professionals during admission contributed to the sense of safety. The familiarity with the mental health professionals in their related units supported the patients in managing their situation. On the other hand, feelings of being overlooked by the professionals and experiencing uncertainty could undermine patients' feeling of safety., Conclusions: We demonstrate that safety is a focal point for patients when receiving help and support in mental health care. Patient-controlled admission can induce a feeling of safety both at the hospital and at home. Patients' self-determination is strengthened, and brief admissions give them an opportunity to handle what they are currently struggling with. Professionals can support patients in this, but their actions can also reduce patients' feeling of safety., Relevance to Clinical Practice: Patient involvement can be introduced in psychiatry, and even severely ill patients seem to be able to assess their own condition. Feasibility may, however, be associated with the attitude and behaviour of the professionals in clinical practice., (© 2020 John Wiley & Sons Ltd.)

Introduction: Advance care planning is a means for patients to communicate their wishes, fears and desires for future health decisions should they lose the ability to consider or communicate these. Despite being supported by governments and healthcare leaders, uptake amongst the general population remains low. Nurses play a crucial role in promoting and engaging with these discussions given their close relationship with patients and families in a range of clinical settings., Aim: To describe the barriers that nurses and healthcare professionals believe prevent them from exploring advance care planning with their patients., Method: We carried out a systematic review of peer-reviewed journal articles from the databases MEDLINE, Embase, CINAHL Plus, Web of Science and ProQuest Central, guided by the PRISMA checklist., Results: Eleven articles were identified: all were self-reporting surveys using a mix of open and closed questions. They originated in the USA, Canada, Australia and Ireland. The participants included various healthcare professionals, with the majority of studies focussing on nurses. The two most important barriers to advance care planning are lack of education and insufficient time. Advance care planning appears to be well supported, and nurses and healthcare professionals report themselves to be comfortable and confident to take on the responsibility., Conclusion: There is a need for greater education and training for nurses and healthcare professionals. In particular, there needs to be better understanding of professional and legal responsibilities. The need for sufficient time to be made available to allow these conversations, in often busy settings, will need institutional and financial support., Relevance to Clinical Practice: Increased training and knowledge are likely to lead to more positive attitudes and greater confidence for nurses, and other healthcare professionals, which should help support and encourage patient engagement with advance care planning., (© 2019 John Wiley & Sons Ltd.)

Aims and Objectives: To examine cancer patients' perceptions of factors that may influence their decisions on participating in phase I-III clinical drug trials., Background: The number of cancer participants in clinical drug trials has increased rapidly in Denmark in recent years. The rights, safety and well-being of patients considering participation are protected by the international, ethical and scientific principles. A meta-synthesis was conducted to enable health professionals to support cancer patients who are considering trial participation in accordance with the above principles., Design: Meta-synthesis., Methods: A qualitative meta-synthesis, as described by Sandelowski and Barroso, was conducted based on a literature search in PubMed, CINAHL, EMBASE and PsycINFO. Nine reports were found eligible and were included. The PRISMA checklist was used., Results: A framework was developed, and patients' perceptions of the factors influencing their decisions were identified, namely patients' perceptions of their relatives, the physician, the hope of therapeutic benefit, altruism, having other options and living with cancer., Conclusions: This study shows that cancer patients' decisions on participation in clinical drug trials are influenced by their perceptions of trust towards the physician, their relatives' attitudes and the consequences participation might have for their families. Patients are motivated to participate due to the hope of therapeutic benefit and for altruistic reasons. The factors influencing their decisions to participate include a cost-benefit consideration, which in turn may be subject to the patient's perception of having other options available besides participation. This may be related to the patient's attitude towards living with cancer, and the decision can be a way of trying to cope with the psychological aspects of living with cancer., Relevance to Clinical Practice: The results of this meta-synthesis offer insight into patients' perceptions of what may influence their decisions, and they enable health professionals to support patients making such decisions., (© 2019 John Wiley & Sons Ltd.)

Aims and Objectives: To examine patients' experiences and preferences for engaging in their healthcare while hospitalised., Background: Promoting patient engagement or involvement in healthcare has become an important component of contemporary, consumer-oriented approaches to quality care. Previous research on patient engagement highlights that preferences for engagement are not assessed while hospitalised, leading to patient role confusion and frustration., Methods: Semistructured interviews were conducted with patients from January-March 2017 to examine their experiences and preferences for engaging in their care while hospitalised on medical-surgical units in the United States. Inductive thematic analysis was used to uncover the themes from the interview transcriptions. The reporting of research findings followed the COREQ checklist., Results: Seventeen patients, eight male and nine female, aged between 19-83 years old were interviewed. Patients had a difficult time articulating how they participated in their care while hospitalised, with the majority stating there were few decisions to be made. Many patients felt that decisions were made prior to or during hospitalisation for them. Patients described their engagement through the following themes: sharing the subjective, involvement of family, information-gathering, constraints, "I let them take care of me," and variability., Conclusions: Engagement is a dual responsibility of both nurses and patients. Patients' experiences highlight that engagement preferences and experiences are not universal between patients, speaking to the importance of assessing patient preferences for engagement in health care upon hospital admission., Relevance to Clinical Practice: The articulation of what patients actually experience in the hospital setting contributes to improve nursing practice by offering insight into what is important to the patient and how best to engage with them in their care. The constraints that patients reported facing related to their healthcare engagement should be used to inform the delivery of future engagement interventions in the acute care setting., (© 2018 John Wiley & Sons Ltd.)

Aims and Objectives: To identify and describe patients' experiences and care needs throughout the diagnostic phase of an integrated brain cancer pathway., Background: A malignant brain tumour is a devastating diagnosis, which may cause psychical symptoms and cognitive deficits. Studies have shown that the shock of the diagnosis, combined with the multiple symptoms, affects patients' ability to understand information and express needs of care and support. Unmet needs have been reported within this group of patients; however, the experiences and care needs of patients going through the diagnostic phase of a standardised integrated brain cancer pathway have not previously been explored., Design: A case study design was used to provide detailed information of the complex needs of patients being diagnosed with a malignant brain tumour., Methods: Research interviews and direct participant observation of four patients during hospital admission, brain surgery and discharge were conducted in a Danish university hospital. Systematic text condensation was used to analyse the data material., Results: Four major themes were identified: information needs, balancing hope and reality while trying to perceive the unknown reality of brain cancer, not knowing what to expect and participants' perceptions of the relationship with the healthcare providers. The analysis revealed that participants were in risk of having unmet information needs and that contextual factors seemed to cause fragmented care that led to feelings of uncertainty and loss of control., Conclusions: Brain tumour patients have complex care needs and experience a particular state of vulnerability during the diagnostic phase. Through personal relationships based on trust with skilled healthcare providers, participants experienced an existential recognition and alleviation of emotional distress., Relevance to Clinical Practice: Patients receiving a brain tumour diagnosis experience unmet care needs in several areas during their hospital stay. There is a need for interventions from healthcare providers., (© 2018 John Wiley & Sons Ltd.)

Aims and Objectives: To explore the meaning of home for six baby boomers and consider how this insight can be used when caring for older people in hospital or residential settings., Background: Feeling at home is important to help retain a sense of autonomy, security and well-being, but home is a complex concept to understand. The baby boomers are a large cohort entering later life and understanding their sense of home is not only an example of anticipatory gerontology but it could also provide the tools to explore home with the current older population, who may be in a variety of care settings., Design and Methods: A qualitative hermeneutic approach was adopted to explore the meaning of home of six baby boomers. The participants were asked to take photographs showing what home meant to them and interpret these in a recorded photo-elicitation interview. Small teams then reviewed the images to provide further insight. Finally, all the data were reviewed to provide an overall analysis of the revealed meaning of home., Results: Having possessions or stuff was important for the meaning of home; being familiar with the local environment was also "homely," as well as certain textures and familiar sounds and smells; relationships with others and the ability to have choice in where and how the participants live were also significant for their meaning of home., Conclusions: The meaning of home is complex. Nevertheless, in this study, an evocative sense of home was revealed and these insights could be used in discussions with older people in care settings to help increase their sense of autonomy, security and well-being. Furthermore, these insights could also be used to develop a framework to help nursing staff guide these discussions., Relevance to Clinical Practice: By considering the multisensory nature of the meaning of home, nurses can create a sense of home for patients. Feeling at home can improve the well-being and a sense of autonomy for patients. Enabling patients to feel more autonomous recognises the importance of a person-centred approach to care., (© 2018 John Wiley & Sons Ltd.)

Aims and Objectives: To undertake a mixed methods thematic literature review that explored how elderly adults approached decision-making in regard to their health care following discharge., Background: A critical time for appropriate health decisions occurs during hospital discharge planning with nursing staff. However, little is known how the 89% of elderly living at home make decisions regarding their health care. Research into older adults' management of chronic conditions emerges as an important step to potentially encourage symptom monitoring, prevent missed care and detect deterioration. All should reduce the risk of hospital re-admission., Design: A mixed methods thematic literature review was undertaken. The structure followed the PRISMA reporting guidelines for systematic reviews recommended by the EQUATOR network., Methods: PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL) and Scopus online databases were searched using keywords, inclusion and exclusion criteria. References drawn from relevant publications, identified by experts and published between 1995 and 2017 were also considered. Twenty-five qualitative, quantitative and mixed methods studies and reviews were critically appraised (CASP 2013) before inclusion in the review. Analysis of each study's findings was undertaken using Braun and Clarke's (2006) steps to identify major themes and sub-themes., Results: Four main themes associated with health-related decision-making in the elderly were identified: "the importance of maintaining independence," "decision making style," "management of conditions at home" and "discharge planning.", Conclusion: Health care decision preferences in the elderly emerged as highly complex and influenced by multiple factors. Development of a tool to assess these components has been recommended., Relevance to Clinical Practice: Nurses play a vital role in exploring and understanding the influence that maintaining independence has with each patient. This understanding provides an initial step toward development of a tool to assist collaboration between patients and healthcare professionals involved in their care., (© 2018 John Wiley & Sons Ltd.)

Aims and Objectives: To describe the tailoring of the Tell-us Card intervention for enhanced patient participation to the Dutch hospital setting using Intervention Mapping as a systematic approach., Background: Even though patient participation is essential in any patient-to-nurse encounter, care plans often fail to take patients' preferences into account. The Tell-us Card intervention seems promising, but needs to be tailored and tested before implementation in a different setting or on large scale., Design: Description of the Intervention Mapping framework to systematically tailor the Tell-us Card intervention to the Dutch hospital setting., Methods: Intervention Mapping consists of: (i) identification of the problem through needs assessment and determination of fit, based on patients and nurses interviews and focus group interviews; (ii) developing a logic model of change and matrices, based on literature and interviews; (iii) selection of theory-based methods and practical applications; (iv) producing programme components and piloting; (v) planning for adoption, implementation and sustainability; and (vi) preparing for programme evaluation., Results: Knowledge, attitude, outcome expectations, self-efficacy and skills were identified as the main determinants influencing the use of the Tell-us Card. Linking identified determinants and performance objectives with behaviour change techniques from the literature resulted in a well-defined and tailored intervention and evaluation plan., Conclusions: The Tell-us Card intervention was adapted to fit the Dutch hospital setting and prepared for evaluation. The Medical Research Council framework was followed, and the Intervention Mapping approach was used to prepare a pilot study to confirm feasibility and relevant outcomes., Relevance to Clinical Practice: This article shows how Intervention Mapping is applied within the Medical Research Council framework to adapt the Tell-us Card intervention, which could serve as a guide for the tailoring of similar interventions., (© 2017 John Wiley & Sons Ltd.)

Aims and Objectives: To describe young children's demonstrated participation in healthcare situations while using an interactive communication tool., Background: Participation is a multidimensional concept influenced by situational and contextual issues. In child participation, verbal and nonverbal communicative expressions are of interest, as both demonstrate the child's perspective. Children have a right to participate in all situations that matter to them, for instance healthcare situations. Children, understood as social actors, express a wish and a need to participate in these situations to get information and to enable preparation., Design/method: In a pilot study, video observations were used to capture the children's use of the interactive communication tool in healthcare situations. A hermeneutic analysis was conducted to achieve a deeper understanding of the children's demonstrated cues of participation., Results: The expressed cues of participation were understood as having either a curious, thoughtful or affirmative meaning of participation and there was a continuous movement between them. Curious cues were expressed when introducing or reintroducing the tool in the situation and demonstrated a wish to get knowledge of the things shown on the screen or to perform the virtual tasks. Thoughtful cues slowed down the progression of the situation when the children needed time to think or adapt to the virtual procedures. Affirmative cues were self-rewarding and demonstrated at successful task performance., Conclusion: An interactive communication tool used in healthcare situations can promote young children's understanding and facilitate their situated participation, which potentially reduces feelings of distress or anxiety. This innovative use of interactive technology within paediatric health care provides new ways of revealing the child's perspective in the situation., Relevance to Clinical Practice: Interactive technology improves understanding and participation of children in healthcare situations, which impact them positively, both in the present and for the future. A communication tool enhances professionals' opportunities to adopt a child-centred approach by responding sensitively to the children's expressions., (© 2017 John Wiley & Sons Ltd.)

Aims and Objectives: The purpose of this multiple case study was to compare and contrast older people's and their relatives' experiences of participation in decision-making processes regarding the planning of everyday life after discharge from hospital., Background: Internationally, patient involvement in health services is established to benefit patient health and to improve quality of the services. The literature shows that at hospital discharge, older people would benefit from better communication and more active participation of relatives in the discharge planning. Little research has been carried out on the experiences of patients and relatives as a family in this context, and even less has investigated their participation., Design: This study used a qualitative design with a comparative multicase approach. Participants were recruited from two hospitals in Norway using a purposive sampling strategy., Methods: Semi-structured interviews were conducted with five patients and with six of their relatives., Results: Three patterns of experiences were identified: contradicting experiences; consistent experiences of nonpreferred participation; similar, but separate experiences of user participation., Conclusions: User participation in the planning of everyday life following discharge appeared to be random and limited for both patients and their relatives, and conflicting for the families as a whole. The decision-making processes seemed to be limited to the hospital context and did not include the broader context of everyday life following discharge., Relevance to Clinical Practice: The results underscore the importance of taking a family perspective when caring for older people. Family meetings might be a useful tool to ensure systematic assessment and integration of the perspectives of both older people and their family in the planning of follow-up care., (© 2017 The Authors. Journal of Clinical Nursing Published by John Wiley & Sons Ltd.)

Aims and Objectives: To identify the contextual factors that influence individual patient involvement during colorectal cancer surgical follow-up consultations., Background: The healthcare system is subject to the requirement and expectation of greater involvement of patients and relatives. Increased patient involvement requires the development and implementation of new communication initiatives. Research shows that it is also necessary to consider the contextual circumstances surrounding patient involvement in specific situations., Design: Case study of a single Danish outpatient clinic, which allows the issues and circumstances involved in an everyday situation to be captured., Method: 12 nonparticipative observations of outpatient visits and, subsequently, seven in-depth patient interviews., Analysis: Content analysis based on a dialogical, interactive framework, which underpinned the identification of current contextual factors., Results: The results showed five contextual factors that seemed to have an impact on patient involvement. The first, 'Two dimensions of patient involvement: treatment-oriented and person-oriented' highlighted a dual interpretation of patient involvement in the consultation situation. The two dimensions seemed to be influenced by four additional factors: 'Doctors leading the agenda', 'Traditional health professional roles', 'Unclear responsibilities' and 'Guidance primarily focused on treatment'., Conclusion: The results showed how patient involvement in clinical practice could be understood as a two-way movement, in which patients are invited to participate in clinical practice, while health professionals are invited to participate in the patients' lives. The movement will change from situation to situation and is influenced by several contextual factors., Relevance to Clinical Practice: The results can help doctors and nurses to navigate using a goal-oriented approach towards patient involvement. The study makes visible the need for research-based development of the independent role of the nursing profession in cancer care follow-up, with a view to enhanced patient-centred care., (© 2017 John Wiley & Sons Ltd.)

Aims and Objectives: To describe patients' experiences of being cared for during invasive monitoring and treatment while awake., Background: Patients with acute heart failure treated in cardiac intensive care are awake during invasive monitoring and treatment and forced to remain in bed rest, sometimes for several days., Design: Exploratory qualitative design., Method: Eight patients were interviewed during invasive treatment. Analyses were conducted according to qualitative content analysis., Results: The participants described their way from a sense of powerlessness and striving to regain control when undergoing invasive monitoring and treatment. Due to their severe illness, they were exposed to the treatment implying a forced loss of empowerment. They surrendered to hospital care. To feel hope and resting from the illness helped the participants to endure the situation. When their condition improved, the need to regain control increased and they wanted to influence their daily care. The participants in present study did not desire to participate in decisions about the medical treatment, but wanted comprehensible information., Conclusion: This study shows how the patients' illness forced them to surrender to the staff's knowledge and treatment. As the patients became more aware, it was important that the healthcare staff did not take over decisions and functions the patients could manage themselves. This helped the patients to endure., Relevance to Clinical Practice: The result of present study could provide guidance for healthcare staff working with the patients cared for using invasive monitoring and treatment while they are awake. If staff has an increased insight of how the patients' condition affects their ability to be involved, they have better understanding of the patients' individual needs. Thus, the staff easier can respond to where the patients are in the process of powerlessness and striving to regain control., (© 2016 John Wiley & Sons Ltd.)

Aim: This paper reports the qualitative findings from a mixed methods study which explored patients' understandings of perceived control in relation to their self care during chemotherapy for colorectal cancer., Background: A greater degree of patient involvement in self care is increasingly being encouraged; however, little is known about how factors such as perceived control influence patients' active involvement in self care., Design: Qualitative, longitudinal study., Methods: Semi structured interviews were conducted with 11 patients before and after six months of chemotherapy treatment for colorectal cancer in a Scottish cancer centre between March 2005-June 2006. The interviews, conducted as part of a larger study, explored patients' understandings of their perceived control over managing treatment-related side effects and how this influenced their attitudes toward, and role preferences in, self care., Results: Patients fell into one of two groups: 'high' or 'low' perceived controllers. High-perceived controllers were more likely to view their active involvement in self care positively, as being necessary in managing treatment-related effects and were less likely to rely on nurses to take overall responsibility for the management of treatment-related side effects. Low-perceived controllers were less likely to believe in the importance or necessity of their active involvement in self care and more likely to perceive nurses as being the ones responsible for the management of treatment-related side effects., Conclusions: Perceived control during treatment for cancer influences patients' perceptions toward, and role preferences in, self care., Relevance to Clinical Practice: Clinical interventions designed to enhance involvement in self care would benefit from focussing on enhancing patients' perceived control and understanding their role preferences in self care. Patients with different understandings of perceived control may require different help and support to encourage their involvement in self care.

Aim and Objectives: This paper aims to present a theoretical account of professional nursing challenges involved in providing care to patients suffering from chronic obstructive pulmonary disease. The study objectives are patients' and nurses' expectations, goals and approaches to assisted personal body care., Background: The provision of help with body care may have therapeutic qualities but there is only limited knowledge about the particularities and variations in specific groups of patients and the nurse-patient interactions required to facilitate patient functioning and well-being. For patients with severe chronic obstructive pulmonary disease, breathlessness represents a particular challenge in the performance of body care sessions., Design: We investigated nurse-patient interactions during assisted personal body care, using grounded theory with a symbolic interaction perspective and a constant comparative method., Methods: Twelve cases of nurse-patient interactions were analysed. Data were based on participant observation, individual interviews with patients and nurses and a standardized questionnaire on patients' breathlessness., Findings: Nurses and patients seemed to put effort into the interaction and wanted to find an appropriate way of conducting the body care session according to the patients' specific needs. Achieving therapeutic clarity in nurse-patient interactions appeared to be an important concern, mainly depending on interactions characterized by: (i) reaching a common understanding of the patient's current conditions and stage of illness trajectory, (ii) negotiating a common scope and structuring body care sessions and (iii) clarifying roles., Conclusion: It cannot be taken for granted that therapeutic qualities are achieved when nurses provide assistance with body care. If body care should have healing strength, the actual body care activities and the achievement of therapeutic clarity in nurses' interaction with patients' appear to be crucial., Relevance to Clinical Practice: The paper proposes that patients' integrity and comfort in the body care session should be given first priority and raises attention to details that nurses should take into account when assisting severely ill patients.

Aims and Objectives: This study will illustrate how stroke survivors, their relatives and different professionals communicated in care-planning meetings when planning care for patients after their discharge from hospital. We wanted to know what topics participants were talking about, to what extent they were involved in the discussion and how the communication was organized., Background: Communication in health care is sometimes problematic because of the participants' asymmetrical positions when negotiating how to understand the patients' future care., Methods: A qualitative and a quantitative design were adopted with a sample of 14 authentic audio-recorded care-planning meetings. The transcribed meetings were, together with observational notes, analysed from a data-driven approach., Findings: Five topics emerged. The professionals tended to dominate the discourse space even if their involvement varied depending on the topic talked about. The most noteworthy finding was the patients' need of communicative alliances with other participants when negotiating their needs and desires of further care. When making decisions two approaches emerged. The 'aim-driven' approach was characterized by alliances between those participants who seemed to share a common goal for the patient's further care. When the participants used the 'open-minded' approach they merged information and discussed different solutions leading to a goal step by step., Conclusions: The importance of strengthening stroke survivors' participation in care-planning meetings is highlighted. Professionals have to increase their knowledge about how to involve the patients as well as their awareness of how to avoid power struggles between various professionals, patients and relatives. Relevance to clinical practice. This study shows the necessity for professionals to involve relatives when negotiating these patients' need of further care and to learn more about how to advocate stroke survivors.

Aims and Objectives: To describe older people's experiences of daily life at the care home after admittance with respect to their perceptions of participation in the decision to move. Furthermore, the aim was to study the experiences of their relatives and contact persons with respect to the daily life of the same residents., Background: When older persons move into a care home, the whole family often play an important part. Thus, it is interesting to study how newly admitted older people, their relatives and staff members experience daily life in a modern care home., Methods: Qualitative design. The participants comprised a purposive sample of 13 residents, recently admitted to a care home, 69-90 years old, both single living and married, both moving from their own homes and from different institutions. Interviews were carried out with the older people (n = 13), their relatives (n = 10) and contact persons (n = 11)., Results: The majority of the residents reported satisfaction with care home living. The relatives were also satisfied, secure and appreciated the privacy and homely atmosphere of the flat. The disadvantage of one-room flats was that the residents might have felt lonely. The relatives felt that the residents were bored, but few residents desired more activities, even if some of them longed for people to socialize with. For many older people, perhaps talking is the most important 'activity' at care homes. Concerning self-determination, some residents did not find it satisfactory., Relevance to Clinical Practice: Staff members must pay attention to residents' need to talk with people. For many older people, talking is perhaps the most important 'activity' at care homes. Nurses must safeguard residents' self-determination. When residents are in control of their lives, they may become satisfied with time.

Aim: To elicit an in-depth understanding of the sources of power and how power is exercised within client-nurse relationships in home-based palliative care., Background: As in all social relations, power is present within client-nurse relationships. Although much research has focused on interpersonal relationships in nursing, the concept of power within the client-nurse relationship in palliative care settings has not been extensively investigated., Methods: Applying a critical lens, secondary qualitative data analysis was conducted. Seventeen nurse and 16 client transcripts from a primary study were selected for secondary data analysis. These 33 transcripts afforded theme saturation, which allowed for both commonalities and differences to be identified. Data analysis involved analytic coding., Results: Study findings help make explicit the underlying power present in the context of home-based palliative care and how this power is used and potentially abused. In analysing the sources and exercise of power, the linkage between macro and micro levels of power is made explicit, as nurses functioned within a hierarchy of power. The findings suggest that educational/occupational status continues to be a source of power for nurses within the relationship. However, nurses also experience powerlessness within the home care context. For clients, being able to control one's own life is a source of power, but this power is over-shadowed by the powerlessness experienced in relationships with nurses. The exercise of power by clients and nurses creates experiences of both liberation and domination., Conclusions: Nurses who are willing to reflect on and change those disempowering aspects of the client-nurse relationship, including a harmful hierarchy, will ultimately be successful in the health promotion of clients in home-based palliative care. Additionally, it should be recognized that nurses work within a specific health system context and, therefore, their practice is influenced by policies and funding models implemented at various levels of the health care system., Relevance to Clinical Practice: The insights gained through this investigation may assist nurses and other health professionals in reflecting on and improving practices and policies within home-based palliative care and within home care in general.

Aim: The aim of this study was to explore nurse practitioner (NP) client encounters from the nurse's perspective using a resource exchange paradigm., Background: In health care interactions there is a need to examine what is reinforcing from the nurse's perspective., Design: An exploratory descriptive design was used to address the following research questions: Prior to a clinic visit with midlife female clients what are NPs expectations of resources provided? What resources are actually provided during the visit with the NP and the client? To what extent is there congruence between the NP's expectations and the resources actually provided during a clinic visit?, Methods: The participants included two expert NPs and eight midlife female clients. Data for the study were derived from an initial larger study which examined resource exchange from the client angle and consisted of audio-taped pre- and postencounter interviews with the NPs, audiotapes of the entire clinic visit and field notes recorded by the researcher of the client visits. Content analysis was conducted using ETHNOGRPAH software., Results: NPs anticipated that a broad range of resources would be provided. The most prominent resources provided across visits were information, services, time and affirmation (that included affirmation itself, reassurance, reinforcement of positive health behaviours, support and feedback). In the more established relationships nurse self-disclosure was evident., Conclusions: Resource exchange theoretical formulations can be applied to NP-client interactions to understand and explain the specific nature of resources NPs expect to provide and actually provide., Relevance to Clinical Practice: The nature of resources NPs provide, relationship development, types of exchange relationships in clinical practice were identified and posit a beginning typology for NPs to apply in their own clinical practice.

Aim and Objective: To explore partnership in care with a small sample of children's nurses in an inner city trust. (i) To obtain local data on what a sample of children's nurses understand by partnership in care and to what degree partnership in care is evident in their practice; (ii) where feasible, to compare these data with national and international literatures describing partnership in care and provide pointers that will be useful in contributing and responding to the children's national service framework., Background: Partnership in care has been practised within children's nursing in UK for over a decade, but is an amorphous topic. More recently, it has been suggested that partnership in care can be described as a part of the spectrum of family-centred care. An exploratory study with 10 experienced children's nurses was undertaken to determine what they understood by the term partnership in care., Results: Seven categories emerged from the data: attitudes, respect for family, communication, parent understanding, effective partnership, all parties (satisfied) and improved well-being., Conclusion: It is suggested that a negative approach to one of the first four categories leads to ineffective partnership in care., Relevance to Clinical Practice: Attitudes, respect for the family and communication should improve to enhance the practice of partnership in care. Respect for the child and family and communication have both been identified as important qualities within the new National Service Framework for Children, Young People and Maternity Services. Further research is suggested to determine the applicability of these findings to other members of the multi-disciplinary team.

Aim: The aim of this research was to explore nurses' perceptions of the attributes of quality care and the factors that facilitate or hinder high-quality nursing care in long-term care., Background: The quality of care for older people living in long-term care has been identified as an issue of concern in many nursing research studies. While many factors have been identified, it is difficult to determine key factors from current research., Method: The study was a qualitative exploration of nurses' perceptions of quality care for older people and the factors that facilitate or hinder quality care. It involved 20 interviews with nurses. Respondents were asked to illustrate their accounts with examples from practice. This phase of the research was guided by the principles of hermeneutic phenomenology and the analysis process by Van Manen., Findings: The findings indicated that nurses perceived quality care for older people in Ireland as holistic, individualized and focused on promoting independence and choice. The research revealed, however, that care in many practice areas was not individualized, patient choice and involvement in decision making was limited and some areas engendered dependency. While staffing was identified as a factor which had an impact on the provision of patient choice, other issues, such as the motivation of staff, the role of the ward manager and the dominance of routine were also highlighted., Conclusion: There is a need to review organizational approaches to care, develop patient centred approaches to care and provide educational support for managers., Relevance to Practice: This research focuses on care for older people; it helps practitioners identify key factors in the provision of quality care for older people living in long-term care.

Aims and Objectives: This study was undertaken to explore health beliefs and expectations implicit in decision-making preferences of Chinese patients admitted for a surgical procedure in a regional hospital in Hong Kong., Background: Patient participation in decision-making about healthcare options is presently being advocated; however, its nature is complex and inadequately explored and understood., Method: Twenty surgical patients, 10 who desired active participation and 10 who desired passive participation, were interviewed about their reasons for their decision-making preference., Results: From thematic analysis of the interviews, 'trust' and 'certainty' emerged as important concepts. Of particular interest is how 'certainty' was construed differently by participants: participants who desired to be passive and have minimal participation in decision-making did not focus on 'certainty' as meaning the predictability of the treatment outcome, but rather 'certainty' related to trust and belief in the ability of the doctor to choose the best option for them. Alternatively, participants who desired greater participation in decision-making spoke much more about the 'certainty' of the treatment outcome., Conclusions: These findings suggest that patients' desire for participation in decision-making about surgery may be related to beliefs, expectations and understanding about certainty., Relevance to Clinical Practice: It could potentially benefit patients if this concept was explored further prior to patients undertaking decisions about undergoing surgery.

Aim: This paper reports on the non-participant observational findings from a study, which examined hospital-based nurses' health promoting nursing practice in an acute setting., Background: Nurses are considered to have a key role in health promotion. However, the development of the role of the generalist hospital-based nurse in health promotion has been slow and is not well-understood., Method: The conceptual framework used was based on the Ottawa Charter (WHO 1986). A single qualitative embedded case study, employing data source and methodological triangulation was used. A framework for identifying nurse's use of health promotion methods was developed and used to collect non-participant observations on a purposive sample of eight nurses working on an acute hospital ward. Following the observations a semi structured one-to-one interview was conducted with each observed nurse. One randomly selected patient that the observed nurse had cared for during the observations was also interviewed. Qualitative data analysis based on the work of Miles and Huberman was employed., Results: Two categories were identified 'health promotion strategies and content' and 'patient participation'. The findings indicated that, overall, the strategies used by nurses to promote health were prescriptive and individualistic. The main strategy observed was information giving and the content was 'preparatory information'. Predominantly, nurses practised traditional health education. Overall, patient participation was limited to minor personal aspects of care as nurses focused on the routine and getting the tasks completed. There was no evidence of a ward culture which valued health promotion., Conclusions: Ward managers are key in creating a culture for health promotion. A review of the methods of organizing nursing care is warranted., Relevance to Clinical Practice: Nursing programmes must highlight health promotion as integral to practice and emphasis the socio-political dimensions of health promotion.

Aims and Objectives: The aim of the primary research was to investigate the impact of the nurse-patient relationship on clinical learning and subsequently clinical practice. Coincidently, 32 participants, all Registered Nurses in Hong Kong, provided details of nurse-patient encounters involving withholding of a cancer diagnosis., Background: The changing face of clinical practice and cancer care has fuelled discussion and debate around disclosure or non-disclosure of the diagnosis of cancer, global consensus on this issue still does not exist. In different countries there is marked variation in how and what a patient may be told about their diagnosis and prognosis. There is considerable variability in the reported rate of cancer diagnosis disclosure across studies and countries. Being asked not to tell a patient their diagnosis of cancer presents many problems for nurses caring for those patients. The issue of non-disclosure directly affects nurses and their clinical practice., Methods: This paper reports one of the findings of a large international qualitative study informed by phenomenology into the perceptions of nurses about caring for a patient with a diagnosis of cancer., Results: Responses from participants revealed considerable difficulties for nurses when caring for patients who were not informed of their diagnosis. They recounted having learned from the encounters but remarked on the negativity of the experience. They discussed their inability to act decisively in the past situations but expressed hope that they had found a resolve to act in future., Relevance to Clinical Practice: Although, overwhelmingly, participants doubted they would actually be able to change the reality of practice. The identified care episode and the nurse-patient relationship, according to participants, did change their clinical practice but often not for the better.

Aim: This paper reports phase II of a pilot study that aimed to determine whether self-insertion of a speculum by women undergoing a pap smear would be more comfortable and lead to an improvement in satisfaction and a decrease in anxiety associated with this procedure., Background: Research demonstrates that pelvic examinations are considered by most women to be unpleasant and are routinely associated with embarrassment, apprehension, fear and often some level of discomfort and/or pain., Design: The study used quantitative and qualitative data collection techniques. Phase I (described elsewhere) tested the newly developed Speculum Self-Insertion Satisfaction Questionnaire for content validity, internal consistency and clarity. Phase II pilot study tested the technique of speculum self-insertion. Women's general level of anxiety was measured using the State Trait Anxiety Inventory, both before and after they performed the self-insertion procedure. Women's satisfaction and acceptance of the procedure was measured using the Speculum Self-Insertion Satisfaction Questionnaire and explored through the use of qualitative research techniques., Participants: A total of 198 women attending family planning clinics in Perth, Western Australia, between September and December 2003 were invited to participate in the study. One hundred and thirty-three women agreed to self-insert their own speculum., Results: The study demonstrated that speculum self-insertion was acceptable to most women, especially younger women. Nearly 91% of women either agreed or strongly agreed that they were satisfied with the experience of self-insertion and would choose to self-insert the speculum again. This included the women who had not previously had a speculum examination. The quality of specimen collected was not detrimentally affected by speculum self-insertion., Conclusions: The results of this pilot research, while needing to be replicated in a larger study, demonstrate that offering women the opportunity to self-insert a speculum during a routine pelvic examination is an acceptable, innovative, simple and cost-neutral change in clinical practice that increases women's comfort and satisfaction and potentially makes sexual health screening less threatening to women of all ages., Relevance to Clinical Practice: Speculum self-insertion may encourage women's attendance at clinics for regular screening. Early diagnosis and treatment will result in better health outcomes for women, families and the community at large.

Aim: The aim of this study was to gather information about patients' needs prior to transferring from an acute care facility to a rehabilitation setting that could assist patients to engage actively in rehabilitation activities upon entering the unit., Background: The provision of information is an important aspect of health care as it assists patients to become informed and actively participate in this care. Improved recovery has been associated with patients' adherence to care regimes., Method: Semi-structured interviews were undertaken with a convenient sample of nine patients shortly after admission/transfer to a rehabilitation unit and with four of these patients after discharge. The intent was to learn what information patients receive prior to admission to the rehabilitation unit, whether this information is useful and whether different information would be more useful to facilitate patients' engagement in the activities central to rehabilitation treatment., Results: Interviews revealed that, generally, patients received very little information about what to expect on admission to the rehabilitation unit and patients' engagement was more dependent on perceptions about rehabilitation. Thematic analysis identified that, in general, rehabilitation was perceived as 'a ticket out' and 'a good thing'. In relation to provision of information of participants identified that 'doesn't matter that I don't know'; 'information is not always meaningful' and 'I will adjust in my own time'., Relevance to Clinical Practice: Health professionals need to recognize that patients are often compliant with decisions made while they are inpatients of the current health care system. Even though patients may 'actively participate' in rehabilitation processes it is often still as a passive recipient of health care.

Aims and Objectives: The purpose of the study was to test the effectiveness of nursing care based on active involvement of patients in their nutritional care. It was hypothesized that this type of care could improve energy and protein intake in elder orthopaedic patients., Background: Protein and energy malnutrition and deterioration in nutritional status is a common but neglected problem in hospital patients., Methods: The design was quasi-experimental with an intervention and control group. The study included 253 patients aged 65 and above admitted for hip fracture, hip or knee replacement. Food intake was recorded on a daily basis during the hospital stay., Results: The daily intake of energy increased with 23% (P = 0.001) and of protein with 45% (P = 0.001). The intake increased from the very first day after the operation. The intake of energy and protein was not correlated with the patient's age, body mass index or type of surgery., Conclusions: The care based on patients' active involvement in their own nutritional care and was found to be an effective method to raise the intake of energy and protein among elder orthopaedic patients., Relevance to Clinical Practice: This way of organizing the care identifies patients who do not consume enough energy and protein according to their current requirements and to take appropriate actions to prevent further malnutrition.

Aims and Objectives: The aim of this study was to clarify Registered Nurses' understanding of patient participation in nursing care. Objectives were to investigate ward nurses' interpretation of the elements of patient participation and its implementation., Background: One goal of health care is patient participation. Registered Nurses must encourage the participation of their patients in nursing care situations. A right for patients to make their own informed choices is laid down in Swedish laws and national and local directives. The concept of patient participation can be interpreted differently and is thus difficult to implement and evaluate. Current nursing literature provides little clarity of the elements and processes of patient participation and conceptual definitions differ., Design and Methods: A qualitative approach was applied and the Grounded Theory method used. Thirty-one Registered Swedish Nurses described the meaning of patient participation and its implementation in nursing care. Seven focus group interviews with nurses providing inpatient somatic care were carried out in five hospitals in west Sweden., Results: Four properties, describing nurses' approaches and procedures, constitute patient participation. The properties are: interpersonal procedure, therapeutic approach, focus on resources, opportunities for influence. These properties were considered crucial for patient participation in a nursing care context., Conclusions and Relevance to Clinical Practice: The results clarify the concept of patient participation from a nursing perspective. A comprehensive description of important factors for patient participation could be made on the basis of nursing experience. This comprehensive description can be used in nursing care practice and its evaluation. The developed categories can be used in nursing care documentation of how patient participation is realized.

Background: The aim of discharge planning conferences (DPCs) is to co-ordinate resources and to enhance patient involvement in care in connection with relocation from hospital. DPCs can be characterized as institutional conversations, and are often executed as standard procedures, but the scientific basis for the activity is weak., Aims and Objectives: The aim of this study was to illuminate and describe the communication at DPCs., Design: A purposeful and consecutive sample of eight DPCs was collected in which the future care of eight women, aged 70 years or more, was discussed., Methods: Transcribed video recordings were analysed in two steps. "The initial analysis" aimed at describing the structure and content of the communication. This description constituted the basis for an interpretation, leading to "the focused analysis" aiming at finding evidence for the assumptions made in the interpretation., Results: The result revealed that the participation of patients was very less the DPCs. The decisions had often already been made, and the women were expected to be pleased with the decision; institutional representatives (IRs) frequently justified their actions by referring to bureaucratic praxis., Conclusions: The women were both encouraged and excluded from participation by the IRs. This dichotomy occurred because the IRs, as professionals, struggled to simultaneously realize their caring mission and their obligation to enforce the values and rules of the institution, i.e. efficiency and rationality. Thus, IRs and patients were equally imprisoned within the institutional system. RELEVANCE TO CLINICAL RESEARCH: This result illustrates how conflicting paradigms are imbedded and reproduced by healthcare professionals in their communicative praxis. Awareness of this is a prerequisite for improvements in working procedures congruent with a caring paradigm that support patient participation.

Background: Providing the individual with the correct information about their diagnosis can help maximize the patient's autonomy, however empirical evidence identifies inconsistencies in the practice of diagnosis disclosure in dementia. Within health care, ethical problems arise frequently and these present a challenge for health care professionals. This challenge can also give rise to conflict when professionals are torn between respecting autonomy, doing good and avoiding paternalism., Aim: The aim of this paper is to highlight the need for interprofessional collaboration when faced with ethical dilemmas such as diagnosis disclosure in the care of adults with dementia. The use of a dialogue and supplementary notes are used to explore crucial ethical points raised by health care professionals., Relevance to Clinical Practice: The increasing rate of dementia and the need for patients to have access to timely and appropriate information about their diagnosis has prompted much debate about disclosing the diagnosis with the individual who has dementia. This paper may also be useful for educational purposes when used as a framework for discussion/debate in student nurse education., Conclusion: Ethical theories are of benefit in assisting the members of the multidisciplinary team to reach a morally defensible decision. Making ethical decisions in practice can cause the nurse concern. While there is no complete set of 'rules' that can provide an answer to each ethical dilemma, it is of immense value to nurses working within the multidisciplinary team to possess a sound knowledge of ethical positions in order to analyse the many complex situations that nurses encounter. The pivotal role of the health care professional is to work in collaboration and engage in sharing the diagnosis with the patient. It is hoped that this paper will stimulate and encourage further debate and study regarding the individual with dementia and diagnosis disclosure. Recommendations for practice, education, policy and research will also be highlighted.

As nursing develops closer partnerships with older people in delivering care, it also needs to develop partnerships in order to create the knowledge base for practice in a way that challenges professional hegemony and empowers older people. However, the process of developing partnerships in research takes place against a background of academic research traditions and norms, which can present obstacles to collaboration. This paper is a reflection on the issues that have arisen in three projects where older people were involved in research at different levels, from sources of data to independent researchers. It points to some of the areas that need further exploration and development.

Background: The role that empowerment plays through involving haematological cancer patients and their families in their treatment and care is undeniable. It encompasses the implementation of various strategies to achieve a sense of empowerment., Aims and Objectives: This phenomenological study sought to identify core strategies used by cancer patients regardless of their illness stage and prognosis who exhibited a strong sense of empowerment in coping with their condition., Design: A phenomenological approach using an in depth interviewing technique was used to identify the common factors which patients and spouses believed could enable them to achieve a measure of control in managing their illness. These measures were referred to as coping strategies., Methods: It was decided to conduct a purposive study and re-interview seven of 12 patients who had previously participated in a pilot Haematology Shared Care project and who had developed a high level of ability in coping with their illness. At the patient's discretion, spouses were invited to participate and to contribute to the interview. Three spouses participated in the interviewing process., Results: Common strategies emerged regardless of the patient's stage of illness and prognosis. Informants identified the determination to remain in control of the illness and treatment side effects, having the support of family and significant others, illness acceptance and maintaining hope as crucial to their sense of empowerment., Relevance to Clinical Practice: It is hoped that clinicians will gain a deeper understanding of the varied and numerous strategies used by cancer patients in coping with their illness. This understanding will ensure that by encouraging these strategies, patients and their families will be supported by health professionals to achieve a greater sense of empowerment. As this and other studies have shown, working alongside health professionals contributes to empowerment for both the cancer patient and significant others in their lives.

Little attention is paid in Emergency Care Units (ECUs) in Sweden to the special needs of older people. The aim of this study was thus to analyse older people's basic needs in the emergency care environment. The study was carried out with a life-world interpretative approach, and the theoretical framework for interpretation was Abraham Maslow's theory of motivation and personality. Seven informants aged between 65 and 88 years, with various experiences of being patients with urgent as well as non-urgent health-related problems, were interviewed about their experiences of ECU care. Their basic needs at the lower levels of Maslow's hierarchy were well-represented in the data. Higher needs, such as desire to know and understand, appeared to be totally neglected. Safety needs dominated the whole situation. Our conclusion is that standards of care must be developed in Sweden to make older patients feel safer and more secure in ECUs. Furthermore, the principles of nursing care for older patients need to be defined in order to encourage them to take an active part in their own health process.

Most research on cross-boundary issues in healthcare focuses on boundaries between groups of healthcare professionals, or between different healthcare settings. This paper considers the boundary between healthcare professionals and their patients, as complementary providers of care to the individual. Following major surgery, patients now spend the vast majority of their rehabilitation period in their own homes. This raises questions about where to draw the boundary around a healthcare intervention, and how to allocate and support responsibility for care once the patient is home. This paper reports the findings of a study within orthopaedic surgery that followed patients from a few weeks before their surgery to 3 months afterwards, recording their interpretations of their healthcare experiences. Most patients were keen to take responsibility for playing their part in trying to optimize the outcome of their surgery, but many were frustrated by lack of information and support to allow them to fulfil this role to their satisfaction. Reconceptualization of patients as honorary members of the healthcare team may facilitate the development of a framework within which the potential contribution of patients to their own care could be valued and supported more effectively. This would contribute towards optimizing patient outcomes and increasing patient satisfaction with care.

The purpose of this study was to identify factors of importance for children's participation in medical and nursing care. A method close to the critical incident technique was used. A total of 92 stories told by staff and containing different levels of children's participation in decision making were analysed. The factors affecting children's participation in decision making were grouped into six categories: the child's protest, the child's age and maturity, the role of parents, attitudes of staff, the time factor and alternative solutions to the problem. This study shows that in certain cases children can affect their situation, bus also that violating actions are performed on children.

Using content analysis of unstructured interviews, this study examined the views of 72 long-term psychiatric patients on the concept of self-determination. The aim was to shed further light on the meaning of the concept for the purpose of developing a better tool for evaluation. One-third of the patients were familiar with the concept, another third had never heard of self-determination. The majority (52 patients) presented their views and definitions regardless of whether they had heard of the concept before. Content analysis revealed two central aspects in the definitions: an intrapersonal aspect, with self-determination defined in relation to the patients themselves or to their own activities; and an interpersonal aspect, with the focus on the patients' relationship with other persons. In spite of its limitations, the study certainly adds to our understanding of the concept of self-determination. It demonstrates that psychiatric patients are capable of offering valuable insights into key concepts of nursing, even if they are abstract. The results open new avenues for strengthening the self-determination of psychiatric patients.

Although recent years have seen an increased emphasis on involving service users in decisions about their care, there has been limited exploration of the theories and ideologies underpinning the concept. This paper identifies two approaches to user involvement, each with implications for the extent to which users can be involved in decisions about their care. The approaches are linked through a 'participation continuum' which is a framework through which the concept of user involvement can be explored, and against which practice can be assessed. The framework must be seen within the context of constraints to user involvement. A more realistic assessment of the extent to which users can be involved in decisions can then be made and the risks of raising unrealistic expectations avoided.