Discharge Planning of Stroke Patients: the Relatives’ Perceptions of Participation

Aims. To describe relatives’ perceived participation in discharge planning for patients with stroke and identify correlates to perceived participation. Background. Stroke affects both patients and their relatives and previous research shows that relatives were often dissatisfied with their perceived involvement in discharge planning and the information they get. Design. Prospective cross‐sectional study. Methods. The study comprised 152 consecutively enrolled relatives (mean age = 60·8 years) of acute stroke patients admitted to a stroke unit in southern Sweden during 2003–2005. Data were collected through interviews 2–3 weeks after discharge using ‘Relative’s Questionnaire about Participation in Discharge planning’. This instrument measures perceived participation in three subscales: R–Information–Illness, R–Information–Care/support, and R–Goals and Needs. The Overall Rating of Relative’s Perceived Participation in Discharge Planning was measured by a visual analogue scale (VAS) (1–10 score). Results. Among the relatives, 56–68% reported positively according to R–Information–Illness, but 46–53% perceived that they did not receive any information about care/medication/rehabilitation/support. About 80% perceived no participation at all in goals and needs. The mean value of the VAS was 3·89 (SD 3·40) score. Regression analyses revealed that longer stay at hospital, patients with higher education, and relatives of female patients and female relatives were associated with relatives’ perceptions of higher participation in discharge planning. Conclusions. Relatives perceived that they needed more information and knowledge about stroke and care/medication/rehabilitation/support. They also needed to be more involved in goal‐setting and in identifying patient needs. Professionals should take into consideration these associated variables to improve relatives’ perceived participation. Relevance to clinical practice. Clinicians should give more attention to the altered situation of stroke patients’ relatives when planning for continuing care and when setting postdischarge goals for the patients. The professionals need to develop strategies to involve relatives in sharing information, goal‐setting and needs assessment in discharge planning.     

Perceptions of supportive communication in Chinese patients with cancer: experiences and expectations

AIM: This paper reports the findings of a study exploring the experiences and expectations of patients with cancer of supportive communication in the context of Chinese culture. BACKGROUND: Patients with cancer experience psychological distress, particularly in the initial period after diagnosis. Supportive communication can positively affect their psychological adjustment. Previous studies have reported the functions, contents, types and sources of informational support for patients with cancer in Western studies, but patients from different cultural backgrounds who have cancer might have different preferences in seeking support. METHODS: Semi-structured interviews were carried out with a convenience sample of 20 Chinese patients with cancer during 2002. Content analysis was used to identify themes within the data. FINDINGS: Chinese patients with cancer have a substantial need to receive informational and emotional support during the period of their hospitalization. Their support networks include doctors, nurses, family members, relatives and fellow patients. The expectations of support from different sources varied according to the nature of the relationship between patients with cancer and providers of support. Patients were active in seeking information and they perceived communication with doctors, nurses and fellow patients as beneficial. Most would only express emotional needs to their close family members and did not expect healthcare professionals to provide emotional support. However, interviewees perceived the caring behaviours of nurses and the emotional support of fellow patients as two important sources of support. CONCLUSION: For Chinese patients, coping with illness and misfortune is largely a private and family affair, and most of them did not expect nurses to meet their emotional needs. Nurses should be aware of the type, timing and source of supportive communication that Chinese patients find valuable. This will help them to provide the appropriate support to meet patients' needs.     

Recovering from cardiac surgery: what patients want you to know.

BACKGROUND: Care of cardiac surgery patients has changed substantially in the past decade, with an emphasis on streamlined procedures and shortened hospital stays. The few qualitative reports of patients' perspectives of this experience focus primarily on physical complications and discomforts during the immediate postoperative period. OBJECTIVE: To examine patients' perceptions of the quality of the nursing and medical care they received during their hospital stay after cardiac surgery. METHODS: Data were collected from a consecutive sample of 89 cardiac surgical patients who consented to participate in 2 telephone interviews at 1 week and 6 weeks after hospitalization. Patients responded to a single open-ended question: "What do you want your nurses and doctors to know to help them do a better job?" Thematic extraction analysis of patients' responses was conducted by using commercially available statistical software. Extracted themes were applied to the structure-process-outcome framework of quality of care. RESULTS: Four major themes (and 12 subthemes) were identified: (1) being satisfied (having a positive experience, getting information), (2) not being cared for (feeling depersonalized, having expectations that did not match recovery experiences, not being listened to, experiencing unprofessional behavior by care providers, experiencing continued care needs after going home), (3) physical needs unmet (sleep, pain, complications, physical environment), and (4) informational needs unmet (needing more or different information). CONCLUSIONS: Patients want nurses and doctors to provide a smooth transition to home, recognize the patients as individuals, prepare them honestly for their experiences with specific information, and manage pain and sleep.     

Coping with stroke: psychological and social dimensions in U.S. patients

Stroke is the third-leading cause of death in the world, affecting 3 million women and 2.5 million men annually. The success of rehabilitation efforts for stroke patients is often measured in terms of physical functioning. However, the literature suggests that the effects of stroke and subsequent adaptation include psychological and social dimensions as well. The purpose of this study was to investigate how patients in the United States perceived their stroke experiences by examining their coping strategies and hopes for recovery. In addition, factors that inspired hope during recovery were identified. Sixty participants with a diagnosis of embolic or ischemic stroke were interviewed during their initial hospitalization. Tape-recorded interviews were coded and categories of data identified. Findings suggested that stroke patients experience a range of physical symptoms and emotions surrounding their stroke experience, and that stroke often interfered with daily functioning. Coping strategies included maintaining a positive attitude and asserting independence, as much as possible, during the acute stroke experience. Many patients expressed general hopes for recovery while some admitted fear of getting worse. Hopefulness was often inspired by interaction with family and spiritual beliefs and practices. The findings will hopefully enhance nurses' understanding of patients' perceptions of the stroke experience and increase their ability to provide interventions that will aid in promoting effective coping strategies.     

Older patients awaiting emergency department treatment

The aim of this study was to describe, through observations and interviews with patients >/=75 years old and the relatives who accompanied them to the hospital, the conditions at the emergency department (ED) and the events that took place during the waiting period. Twenty older patients were studied, together with their relatives. A modification of a comparative design, the interpretative method 'grounded theory', was utilized. Open, nonparticipant observations were carried out; from the time patients were admitted until the time they were discharged. Patients were observed through all stages, for example, in the reception area, in the examination room, and in the X-ray department. The observations were supplemented with field notes and interviews with the older patients as they left the ED. The selective coding developed into six core-variables that were the focus of the material. These were: unpleasant waiting, unnecessary waiting, lack of good routines during the waiting stage, suffering during the waiting stage, bad feelings during the waiting stage and nursing care during the waiting stage. The way, in which nursing care was carried out, which in this context is discussed in terms of praxis and poieses, appeared to be of major importance for the older peoples' experiences when visiting the ED.     

Families and hospitalized elders: A typology of family care actions

The extensive care provided by families to their elderly relatives in the home is well documented. Although family caregiving is likely to be continued during hospitalization of elderly relatives, limited research has been conducted to address the nature of family care for hospitalized elders. The main purpose of this qualitative study was to refine the content domain of family care for hospitalized elders. Altogether 25 interviews were done. Of the 16 participants, 6 were family members, 6 were patients, and 4 were nurses; 7 participants were interviewed once and 9 participants were interviewed twice. Qualitative analysis based on Lofland and Lofland's (1984, 1995) approach resulted in the identification of three major content domains: family members providing care to the patient, working together with the health care team, and taking care of themselves. This typology suggests a shift of research in this area from its current focus on family needs to a view of family caregivers as partners with the health care team.     

The experience of being a middle-aged close relative of a person who has suffered a stroke – six months after discharge from a rehabilitation clinic

Scand J Caring Sci; 2010; 24; 116–124
The experience of being a middle‐aged close relative of a person who has suffered a stroke – six months after discharge from a rehabilitation clinic Being a close relative brings with it a large number of consequences, with the life situation changing over time. The aim of this study was to illuminate the experiences of being a middle‐aged close relative of a person who has suffered a stroke 6 months after being discharged from a medical rehabilitation clinic. Narrative interviews were conducted with nine middle‐aged close relatives and analysed using a content analysis with a latent approach. The analysis revealed that being close to someone who had suffered a stroke 6 months after discharge meant; a struggling for control and a renewal of family life in the shadow of suffering and hope. The middle‐aged close relatives began to perceive the changed reality. They were struggling to take on something new, become reconciled and find a balance in their family life. Their ability to work, relief from caring concerns and having support and togetherness with others seemed to be essential for the close relatives in their efforts to manage their life situation and maintain their well‐being. Having reached the ‘halfway point’ in their lives and still with half of their life in front of them created worries. They felt dejected about their changed relationships and roles, experience a sense of loss of shared child responsibilities, a negative impact on their marital relationships and sexual satisfaction. They felt trapped in a caring role and they worried about how to endure in the future. The middle‐aged close relatives’ experiences were of being alone and neglected, in an arduous and complex life situation filled with loss and grief. The findings highlights that health professionals need to see and listen to the close relatives’ experiences of transition in order to provide appropriate support adjusted to their varying needs during a time of renewal.     

The experience of being an 'extracorporeal membrane oxygenation' relative within the CESAR trial

Aims and objectives: This article reports a study exploring experiences of the relatives of adult patients receiving extracorporeal membrane oxygenation (ECMO) within the CESAR trial. Background: Relatives of ECMO patients have undergone unique experiences which have not previously been addressed in the literature and thus may have different needs which may not be met by present practice. Design and methods: A grounded theory approach was adopted. In‐depth unstructured interviews were conducted with family members of 10 surviving adult patients who had been randomized and received ECMO within the CESAR trial. Results: Relatives have a range of needs specific to the ECMO experience, these include the depth and positivity of information. Particular areas for support were concerning a perceived self‐inflicted nature of illness, personal guilt, distance from home, receiving ‘the call’, weaning from sedation and transfer/discharge from the ECMO unit. Conclusions: Relatives would benefit from the opportunity to talk about their ‘ECMO experiences' following the patient's recovery to enable them and their families to ‘move on’. Relevance to clinical practice: Interventions need to be in place to follow‐up relatives and patients to provide ongoing support to the family unit.     

Where to from here: patients of a day hospital rehabilitation programme perceived needs following stroke

The loss of ability to perform routine activities can result in difficulties for the stroke patient to resume their normal lifestyle. A desire to assist stroke patients after discharge prompted this pilot study into the needs of these patients during and after a program of rehabilitation at a day hospital. A longitudinal approach was used for this pilot study. The aim of the study was to identify patients' needs pertaining to the resumption of their lifestyle, and social and emotional well-being, that emerged during the rehabilitation programme at the day hospital, on its completion and within six months of discharge from the day hospital. The study consisted of three semi-structured interviews with ten stroke patients over a period of nine to twelve months. The semi-structured interview employed open-ended questions to collect information from the participants. The interview process sought to elicit the needs of the participants during their time at the day hospital and then after discharge. It was evident from the interviews that the needs of the participants were primarily the opportunity to practice activities which could improve physical capabilities as the physical limitations placed on the participants by the stroke affected their motivation, morale and general sense of self. The day hospital was instrumental in providing participants with opportunities to learn to 'use' what was functioning, and therefore help the participants improve their physical capabilities. This assisted them to regain their independence. During the interviews participants also spoke about social and emotional needs. While they received some support from interactions with the staff and other patients at the day hospital, participants stated that mostly social and emotional support came from their families. After discharge from the day hospital participants were unable to identify specific needs which they believed the day hospital could provide.     

Determining the needs of chinese parents during the hospitalization of Their child diagnosed with cancer: an exploratory study.

In Hong Kong, as in other modern societies, cancer is the second cause of death among children. Studies show that childhood cancer affects all family members who frequently experience emotional and social problems resulting from managing the stress created by the disease and side effects of treatment. This subsequently results in parents experiencing a range of different needs. There is little evidence available of the needs of Chinese parents during the hospitalization of their child. An exploratory study was undertaken using in-depth semistructured interviews with 5 parents recruited from the pediatric oncology ward of a regional hospital in Hong Kong. The parents were interviewed twice during the active treatment phase to explore their changing needs during this initial period of hospitalization. All interviews were tape-recorded, transcribed, and translated into English before content analysis. The analysis of the parents' data identified 6 main categories common to both interviews: (i) the need for recognition of their reaction, (ii) the need for recognition of their fear of hospitalization, (iii) the need for support, (iv) the need for information, (v) the need for personal time, and (vi) finally the need for help in parenting skills were identified. The implications of these findings for nursing practice are presented.     

Older men's experiences of sleep in the hospital

Aim and objectives. The aim of this study was to examine the sleep experiences of older patients during a period of hospitalization on an extended care ward. Background. Hospital wards have been demonstrated as environments that are not conducive to sleep for patients. Findings highlight the difficulties of falling asleep and getting insufficient sleep as the major causes of sleep disturbances. Such studies limit themselves to patients of Intensive Care Units and acute care settings. Relatively little is known about understanding the sleep experiences of older patients whilst hospitalized on extended care wards. Method. An exploratory qualitative design was used with a convenience sample of six Chinese male informants, recruited from an extended care ward of a Rehabilitation Hospital in Hong Kong. Multiple data collection methods were used, including repeated semi‐structured interviews and a one‐week sleep diary. Results. The findings demonstrated that all informants experienced dynamic changes in their sleeping patterns during hospitalization, resulting in sleep disruption and deprivation. The public nature of the ward environment and perceived sense of helplessness significantly interfered with sleep. Some cultural beliefs and practices were perceived by older patients to be associated with the quality of their sleep experiences. Conclusion. The findings contributed to an understanding of the sleep experiences of older patients during hospitalization. Relevance to clinical practice. Implications for nursing practice indicate the significance of including focused sleep assessment of patients during admission into the ward, so strategies perceived by older patients as being able to improve sleep would be included as part of the usual ward routine and nursing practice, where possible.     

'If only I manage to get home I'll get better'--interviews with stroke patients after emergency stay in hospital on their experiences and needs

OBJECTIVE: To find out about the experiences of stroke patients concerning their falling ill, their stay in hospital, discharge and homecoming. DESIGN: Qualitative methods using in-depth interviews. SUBJECTS AND SETTING: Nine strategically chosen patients and in five cases near family members were interviewed in their homes four months post stroke and following care at the Stroke Centre, University Hospital of Northern Sweden, Ume?. RESULTS: Three main categories with subcategories were brought to the fore from the interviews: 'Responsible and implicated', 'Depersonalized object for caring measures' and 'The striving for repersonalization and autonomy'. The patients got the most important insights and understanding about their state and the consequences when they came home. CONCLUSION: The three main categories that were found mirror the crisis which becoming ill entails and the process gone through when the individual takes control again of his or her life. The patients saw coming home as an important factor for their recovery and rehabilitation. The health care system needs to develop strategies to make use of the power of this attitude with the patients and to use the patients' own milieu in rehabilitation after stroke.     

肝移植受者术后住院期间需要状况的质性研究

[目的]了解肝移植受者术后住院期间的需要状况。[方法]运用现象学方法，深入访谈了11例接受肝移植手术后康复出院的病人。将获得的资料依据马斯洛需要层次论的5个概念进行整理、归类、分析。[结果]肝移植受者术后存在各种需要无法满足的状况，生理需要较强烈。这与疾病影响、病房环境不良、亲人探视受限、医护人员责任心不强有很大关系。[结论]肝移植受者术后不同阶段存在不同的需要。护理人员只有深入了解病人，为其提供全方位的服务，才能最大限度地满足病人的合理需要。     

Relatives' experiences in intensive care--finding a place in a world of uncertainty.

The aim of the study was to explore and describe the experiences of relatives of critically ill patients in adult intensive care. A qualitative research design was chosen, using a Grounded Theory approach. In-depth interviews were conducted with four spouses and three parents in a Danish University Hospital. An overall process of fitting in was apparent, explaining how relatives tried to manoeuvre in a chaotic and scary situation. The relatives were clearly in turmoil, yet found ways of coping in the situation and developing adaptation ability. Three major strategies were identified: enduring uncertainty, putting self aside and forming personal cues. This explorative study points to relatives being vulnerable and resourceful at the same time, struggling to find a place, experiencing distance from the patient as well as from the professionals and uncertainty regarding what to expect and how to act in the ICU. The study is a contribution to understanding relatives' needs and strategies and to developing better communication and cooperation between nurses and the patients' relatives.     

The meaning and value of taking part in a person-centred arts programme to hospital-based stroke patients: findings from a qualitative study

Purpose: The importance of addressing mental well-being while stroke patients are in hospital has been recognized by policy makers but there is a gap between rhetoric and reality. This study explored the potential for using a person-centred, artist facilitated, one-to-one arts programme to improve the emotional and mental well-being of patients, which may be adversely affected as a result of the negative experiences arising from stroke and hospitalization. Method: The study focused on those patients remaining in hospital for above average durations and included patients with functional, cognitive and speech or language impairments. After participation in the arts programme and before discharge, semi-structured interviews were undertaken with sixteen patients, and in the case of two patients with severe cognitive loss, a relative, as a proxy, was interviewed. Interviews explored the experience of stroke and hospital stay and the meaning and value of taking part in Time Being Stroke and the data was analysed thematically. To underpin and contextualize the interview material, clinical status and treatment information routinely collected by the multi-disciplinary stroke team was obtained and analysed; in addition material on the content of each session was recorded by artists and analysed. Results: Patients’ accounts suggest that participation in a person-centred arts programme contributed to their mental well-being. As might be expected from a person-centred intervention, benefits varied across the sample, but the most commonly mentioned positive aspects of participation included the experiences of: pleasure and enjoyment, a sense of connection with the artists, mental stimulation, learning and creativity, engagement in purposeful occupation and relief from boredom, and reconnection with valued aspects of the self. These experiences of participation contrast strongly with the acute and chronic distress associated with stroke, impairment, and spending long periods of time in hospital. Conclusions: Arts interventions such as the one implemented and evaluated in this study provide a positive and valuable experience for longer staying stroke patients, contributing to their mental well-being during an otherwise distressing illness and hospital stay.

Implications for Rehabilitation

• Stroke and the resulting impairments and long stays in hospital cause considerable distress to patients, and a high proportion of patients experience depression and anxiety.

• Addressing emotional and mental distress in patients is a priority for patients and relatives, and for hospital trusts and policy makers, but clinicians rarely have the time to address the emotional aspects of stroke.

• Participation in a one-to-one person-centred arts intervention facilitated by artists with experience of vulnerable patients can offer enjoyment, learning and mental stimulation.

• Through these a contribution to patients’ mental well-being during hospital stay can be made, which may address emotional distress.

     

Experiences of surviving spouse of terminally ill spouse: a phenomenological study of an altruistic perspective

The aim of the study was to illuminate the experiences of surviving relatives in connection with their care at home of terminally ill, dying spouses, followed by an outline of the need for palliative assistance by the district nurse. Qualitative interviews with eight surviving relatives have been analysed on the basis of the phenomenological method. The essence of these phenomena was the loving promise to the terminally ill and dying spouse in which the shared grief, structural disintegration and powerlessness, lifelines and supporters and viable grief appeared. This promise consisted of that dying spouse will be able to stay at home during the illness and his or her desire to die at home. It was given during uncomfortable hospitalization and springing from the spouse's desire for autonomy and integrity at the end of his or her life. In keeping the promise, the surviving spouse became altruistic, neglecting his or her own primary needs in the unselfish fulfilment of the needs of the terminally ill spouse. The surviving spouse grieved in lonely isolation characterized by stress and an ethical dilemma in connection with breaching the promise. Light was shed on the professional palliative care with the surviving spouse's lacking verbalization of grief and powerlessness, regardless of whether expert professional palliation or insufficient professional palliation was provided. In that way the findings of the study showed the necessity for professional involvement in the decision concerning palliation at home, including identification of the resources of the primary caregiver.