Social support, participation and collaboration of relatives in domiciliary care

This article is based on material from two domiciliary care studies which were carried out in two large towns in southern Finland. The patients in domiciliary care received a considerable amount of both practical and mental or social support from their relatives. Support received from relatives correlated with patients' well-being. Patients who had more difficulties with physical daily activities received more help from relatives than patients who had less difficulties. Therefore, the help from relatives was necessary for continuing home care, especially for those whose physical condition was poor. The participation of relatives in the patient's care, particularly when they were able to collaborate with domiciliary care providers, improved the quality of patient care and enhanced the security and satisfaction of the patient.     

Participation of informal caregivers in the hospital care of elderly patients and their evaluations of the care given: pilot study in three different hospitals

This action research is an ongoing study which will last from 1991 to 1993. The main purpose of the study is to increase the participation of informal caregivers in the hospital care of elderly patients without decreasing the quality of care. The data reported here are from a pilot study. This study had three aims: (a) to test reliability and validity of the measure used, (b) to investigate the current participation of informal caregivers in the hospital care of elderly patients (aged over 75), and (c) to evaluate and compare the quality of care from both the patients' and the informal caregivers' point of view in three different hospitals. The measure of quality of care was developed on the basis of need theories, mainly those of Maslow and Alderfer. Patients and caregivers were also asked to rate the participation of the caregivers in the hospital care of elderly patients. Participation consisted of 18 activities of daily living. The pilot test with 18 elderly hospital patients and seven family members or significant others showed differences between the two groups in perception of care received. Statistically significant differences (P < 0.001) were found in the following categories: mainly social needs, psychic and spiritual needs and totals. The results supported earlier findings that elderly patients are satisfied with and do not criticize their care. The younger generation (i.e. their children) is more demanding and has precise perceptions about the care given. Relatives could be used more in planning, evaluation and even implementation of care; however, their current participation in patient hospital care is minimal.     

Shared decision making: an approach to strengthening patient participation in rehabilitation

In this paper, the concept of Shared Decision Making, i. e. the participation of the patient regarding the selection of therapeutic goals and treatment options, is presented. The degree of patient participation in medical decisions varies widely across different models of the physician-patient relationship. According to the paternalistic model, the physician knows best what is in the patient's interest; patient participation is limited. This model clearly does not take into account patients' autonomy and desire for information appropriately. In contrast, the informative model claims that values are well-known to the patient while the physician's role is restricted to providing him with the necessary information. However, the assumption of fixed values may be challenged. Patients expect their doctors to be not only technical experts but also caring persons. In the interpretive model, the physician's task is to help the patient to identify and express his values. In the deliberative model, both physician and patient engage in an open discussion about the values the patient could and should pursue. The physician is allowed to present his own preferences, and conflicting values are discussed explicitly. Thus, the patient is empowered to choose between alternative preferences. This model forms the basis of shared decision making, which involves at least two participants who engage in a process of both mutual information and interactive discussion. Patient participation should result in a greater sense of personal control, more satisfaction with treatment, better compliance and transfer into the daily routine of disease management and, consequently, better outcomes. Although it is largely unknown whether these outcomes are achieved, indirect evidence may be gained from systematic reviews showing that a favourable physician-patient communication (i. e. allowing patients to express their information needs and concerns and to receive both information and emotional support) produced better outcomes regarding both mental and physical health. There are several barriers to shared decision making. No information exists regarding the degree to which physicians are interested in shared decision making. While there is ample evidence that patients' needs for information are high, patients' wishes for participation seem to vary widely, though. Both physicians and patients require the ability to make shared decisions. Structural restraints include time and institutional inflexibility. To conclude, shared decision making is a promising approach to enhance patient participation in rehabilitative care.     

Patient approaches to clinical conversations in the palliative care setting

AIM: The aim of this paper is to report a study exploring patients' understanding of their discussions about end-of-life care with nurses in a palliative care setting. BACKGROUND: It is assumed that nurses are central players in patients' major decisions about their care, yet minimal information is available about the complexity of patient-nurse interaction in palliative care, and patients' views of the impact of such interactions on decisions that are made. METHOD: A modified version of grounded theory was used to collect and analyse interview data collected in 2001-2002 with a convenience sample of 11 patients in a palliative care setting. Interviews focused on each patient's selection of two decisions they had made in the past 6 months that had involved nurses in the decision-making process. FINDINGS: Processes were identified between nurses and patients that facilitated or blocked open discussion and discernment of patients' preferences for care. Six approaches that patients used in their conversations with nurses about their care: wait and see, quiet acceptance, active acceptance, tolerating bossiness, negotiation and being adamant. These approaches are described in terms of how they assisted or impeded autonomous decision-making. CONCLUSION: Palliative care patients often adopt passive roles and tend not to engage in important decision-making, for various reasons. Professionals need to be made aware of this, and should facilitate an open, trusting relationship with patients in order to ensure that important information passes freely in both directions. Professionals should learn to prioritize patient participation and negotiation in their work. With further research, it should be possible to identify the factors that will allow patients to take a more pro-active role in making decisions about their care, where desired.     

User participation in district psychiatry. The social construction of ‘users’ in handovers and meetings

An ideal in mental health care is user participation. This implies inclusion and facilitation by clinicians to enable users to participate in decisions about themselves and in the design of suitable treatment. However, much of the work of clinicians consists of handovers and other meetings where patients are not present. It is therefore interesting to study how the patient perspective is handled in such meetings and whether it forms a basis for user participation. We conducted fieldwork in three different inpatient wards in Norwegian District Psychiatric Centres. We used an interactional perspective in our analysis, where speech acts, framing and footing were key concepts. The findings show that the talk in the handovers and meetings contained five main themes and that there was a clear correlation between what was said and how it was said, and whether clinicians related to the content in a decisive, person‐centred or indecisive manner. We discuss potential participation statuses for patients and their limited opportunity to influence the talk and possible decisions about themselves. Our conclusion is that handover meetings primarily function as an aid in organising clinicians' work and could ultimately be seen as counteracting user participation.     

A project to raise the participation rate in education groups by psychiatric patient family members

The objective of this project was to increase the rate of participation in relevant educational programs of immediate relatives of individuals currently undergoing psychiatric treatment. According to statistics, the average participation rate in such educational programs averages only 23.4%; a ratio considered unacceptably low. After analysis, major problems identified included: (1) relatives were not informed in advance of meeting schedules; (2) there was no standard manner by which hospitals communicated with relatives; (3) interaction between patients and their families was, in general, poor; (4) program staff were unable to ensure that relatives knew correct meeting times; and (5) relatives generally lacked interest in health education topics. A special project group was organized and charged to improve the rate of participation of psychiatric patient relatives in health education groups. Three proposals made by this group included: (1) create an annual patient relative attendance planning schedule; (2) implement a patient "life passport" for use as a standardized tool in day hospital care; and (3) arrange time after education activities for patient-parent interaction. After measures were implemented, patient relative participation in education programs rose to 64.8% from 23.4%. Results demonstrate method feasibility and validity. As the proposed method does not require nurses to send out notifications or conduct follow-ups over the phone, it indirectly cuts down costs and manpower and improves patient-family relations, ultimately raising the quality of nursing care.     

Capturing the concealed: Interprofessional practice and older patients' participation in decision-making about discharge after acute hospitalization

The aim of this paper is to investigate ways in which the dynamics of interprofessional work shaped older patients' "participation" in decision-making about discharge from acute hospital care in a medical directorate of a District General Hospital in Scotland. Twenty-two purposively selected older patients and their key professional hospital carers in three different ward environments participated in the study. An ethnographic approach was adopted, involving semi-structured interviews with patients and staff combined with rigorous observation of the practical context for staff and patient interactions during the discharge planning process over a 5-month period. Patients' and staff's understanding of "decision-making" and their priorities for discharge were different, but patients' perspectives fragmented and became invisible. Care routines, which centred around assessments and the decisions that flowed from these tended to exclude both staff and patients from active decision-making. Research and practice on patient involvement in discharge decision-making needs to focus on the organizational context, which shapes patients', unpaid carers' and staff's interactions and the dynamics by which some views are privileged and others excluded. Procedurally driven care routines and their impact on patients', carers' and staff's opportunity to actively engage in decision-making should be re-considered from an empowerment perspective.     

Ethical conflicts over verbal statements regarding last wishes

Within our socio-professional framework, there are few occasions in which there is sincere communication between health care teams and patients and their families that allows questions to be raised about decisions made during the process of an illness i.e., whether an intervention, or its omission in certain cases, would be accepted. Decisions regarding representation or living wills are merely an extension of the inclusion of the patients' moral autonomy in clinical decision making. Nevertheless, the best way to make patients' rights effective is not by focussing on these documents, but rather by achieving the development of integral processes that promote patient participation and decision making. On the basis of a discussion in which a number of ethical conflicts that concern patients' last wishes are intertwined, we present the following clinical case that allows reflection on the most effective kind of intervention, the nature of its duration and intensity and the way health care professionals must be faithful to patients' and families' desires and expressions in these cases.     

An approach to consistent patient education

Patient education is instrumental to postoperative recovery. To that end, the nurse must be able to decipher the discharge instructions and the patient and caregivers must be able to understand them. Ambulatory surgery patients are in the clinical setting for shorter periods; therefore, nurses need to provide these patients with effective educational tools that will assist them in achieving optimal surgical outcomes. In an effort to improve our perioperative and discharge orders, which were being handwritten, I created standardized forms that require little handwriting and allow surgeons to complete their orders by checkmarking the items. Use of these forms has improved turnover time, provided nurses and patients with orders that are easier to read and understand, and produced fewer incidences in which information is left off orders or misunderstood. Following up with patients to ensure their comprehension and active participation in their postsurgical care allows the nurses to assess the success of surgical care and patient satisfaction.     

The core of patient-participation in the Intensive Care Unit: The patient’s views

ObjectivesPatient participation is an established concept in public welfare. However, reports of the phenomenon of patient participation during intensive care from the patient’s point of view are scarce. Therefore, the aim of this study was to explore the meaning of patient participation in the intensive care unit from the patient’s perspective.Research designA qualitative design was used for the purpose of the study with a purposive convenient sample of nine adult patients with memories from their intensive care stay.MethodData was collected through individual interviews and analysed using a phenomenological hermeneutical method.FindingsThe results of our study show a variety of meanings and degrees of participation that continuously move on a sliding scale from acting as a captain to feelings of being on an isolated island. Patient participation varied due to individual cognitive abilities and individual preferences, and the caregiver’s attention altered between the body and the person through the continuum of care.ConclusionPatient participation during ICU care is more than participation in decision-making processes or direct patient care decisions. An understanding of the concept participation from the individual patient is necessary to support person centred care and the patient’s relatives play an important role in during the entire care process.     

Variations in and factors influencing family members' decisions for palliative home care

The purpose of this paper is to describe the variations in and factors influencing family members' decisions to provide home-based palliative care. Findings were part of a larger ethnographic study examining the social context of home-based palliative caregiving. Data from participant observations and in-depth interviews with family members (n=13) providing care to a palliative patient at home, interviews with bereaved family members (n=47) and interviews with health care providers (n=25) were subjected to constant comparative analysis. Findings indicate decisions were characterized by three types. Some caregivers made uninformed decisions, giving little consideration to the implications of their decisions. Others made indifferent decisions, whereby they reluctantly agreed to provide care at home, and still others negotiated decisions for home care with the dying person. Decisions were influenced by three factors: fulfilling a promise to the patient to be cared for at home, desiring to maintain a 'normal family life' and having previous negative encounters with institutional care. Findings suggest interventions are needed to better prepare caregivers for their role, enhance caregivers' choice in the decision-making process, improve care for the dying in hospital, and consider the development of alternate options for care.     

Participation of caregivers in elderly-patient hospital care: informal caregiver approach

This preliminary study is part of an ongoing action research project in three different kinds of hospitals Two wards in each hospital volunteered for the study The purpose was to discover in which activities of daily living informal caregivers currently participate and to what extent Participation of informal caregivers consisted of 17 activities Elderly patients ( n = 45) eligible for the study and informal caregivers ( n = 147) completed a questionnaire They were asked in which daily activities informal caregivers participate and how often, options ranging from daily to never Responses of informal caregivers are reported in this paper Results indicated that relatives and other significant others visited elderly hospital patients often, however, their participation in activities of daily living in hospitals was limited Mostly they gave emotional support and helped the patient to drink, stand up/get into bed and sit Implications for nursing are discussed     

151例无陪护住院老年患者围手术期的护理管理

对医院外科系统9个科室需要手术的151例无陪护住院老年患者实施了围手术期无陪护护理管理.包括护理安全评估、护理照顾分级、设定无陪护患者围手术期临床路经、建立护理小组、进行护理质量控制等.解决了无陪护住院老年患者围手术期的安全与舒适问题,提高了患者及其家属的满意度.     

Palliative care in a coronary care unit: a qualitative study of physicians' and nurses' perceptions

Background. Earlier research has shown that physicians and nurses are motivated to provide good palliative care, but several factors prevail that prevent the best care for dying patients. To provide good palliative care it is vital that the relationship between nurses and physicians is one based on trust, respect and sound communication. However, in settings such as a coronary care unit, disagreement sometimes occurs between different professional groups regarding care of dying patients. Aim and objectives. The aim of this study was to describe and understand physicians’ and nurses’ perceptions on their working relationship with one another and on palliative care in a coronary care unit setting. Design. Using a convenience sample, professional caregivers were interviewed at their work in a coronary care unit in Sweden. Methods. Data collection and analysis were done concurrently using a qualitative approach. Results. From the interviews, a specific pattern of concepts was identified. The concepts were associated with a dignified death, prerequisites for providing good palliative care and obstacles that prevented such care. Conclusions. Caregivers who work in a coronary care unit are highly motivated to provide the best possible care and to ensure a dignified death for their patients. Nevertheless, they sometimes fail in their intentions because of several obstacles that prevent good quality care from being fully realized. Relevance to clinical practice. To improve practice, more attention should be paid to increasing dying patients’ well‐being and participation in care, improving strategic decision‐making processes, offering support to patients and their relatives, and improving communication and interaction among caregivers working in a coronary care unit. Caregivers will be able to support patients and relatives better if there are good working relations in the work team and through better communication among the various professional caregivers.     

Participation of relatives in the care of cancer patients.

This study aims to find out how important it is for relatives to take part in the care of cancer patients and to see to what extent they actually do take part. Participation is defined as consisting of concrete care activities, emotional support and participation in decision-making concerning the patient's care. The sample comprised 168 relatives of cancer patients from oncology wards all over Finland. Data were collected with a questionnaire specifically developed for this study. Nonparametric tests were used for statistical analyses. The results showed that the most important aspect of relatives' participation was supporting the patient emotionally; providing concrete care and participation in decision-making were both considered less important. Over 80% of the relatives said they gave a considerable amount of support to the patient. Most relatives said that they visited the patient in hospital, talked to the patient about their concerns and were near them whenever they felt they needed that. On the other hand, relatives did not take part in discussions about care, nor were they informed about such a possibility.     

Legal considerations at the end of life

Patients with end stage renal disease (ESRD) and their families face questions related to dying that are touched by legal mandates. This article addresses patients' legal rights and the nurse's role in advocating for these rights. Advance directives, competency to make health care decisions, assisted suicide, disability law, and the duty to provide reasonable and safe care are specific areas discussed in the article. Nurses must become familiar with legal requirements; communicate effectively with patients, families, and other caregivers; provide care that falls within the standard of care expected of nephrology nurses; and advocate for policies that enhance ESRD patient care.