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.     

Patients' and nurses' experiences of the caring relationship in hospital: an aware striving for trust

The phenomenon, caring relationship, has been widely studied in earlier research. Nevertheless, empirical studies in hospital, concerning patients and nurses experiences of the actual phenomenon caring relationship are rare. The aim was to illuminate patients with long-term illness and nurses' experiences of the caring relationship. The data were collected from 13 interviews, seven patients and six nurses, which were then analysed using an interpretive phenomenological method. This study shows patients' and nurses' view of the phenomenon. The findings concerning patients' view were identified in themes --'Maintaining dignity' with subthemes: using one's own competence and being cared for by the team as well as 'A feeling of vulnerability' with subthemes: being cared for in a strained situation and being exposed, inquiring personal caring relationship. The findings concerning nurses' view were identified in the following themes: 'A purposeful striving' with subthemes: using one's own competence and being aware of limitations as well as 'An arduous compassion' with subthemes: giving care in a strained situation and being aware of what is needed. These findings show that patients and nurses were aware in their striving for trust through forming a caring relationship. Their striving was not enough to result in trust. The findings in this study are understood as patients need a personal caring relationship which enables the possibility of trust.     

Reflections on loss without death: the lived experience of acute care nurses caring for neurologically devastated patients

The article reports the lived experiences of eight acute care nurses who cared for three patients with severe brain injury. The patients were hospitalized for months, primarily as a result of family dynamics. Semistructured interviews of the nurses were audiotaped, transcribed, and analyzed for common themes that described their experiences. Research focused on what the nurses experienced regarding patient care and how they interpreted their experiences. Seven themes were uncovered: fear and vulnerability, trying to connect (with patients), empathy, futility, feeling abused (by families), struggling for support (from colleagues and physicians), and seeking affirmation through physical care. General interpretations of the experience were negative.     

Parents and partners: lay carers' perceptions of their role in the treatment and care of adults with cystic fibrosis

BACKGROUND: Cystic fibrosis (CF) is the most common autosomal recessive genetic disease in Caucasian people, traditionally conceptualized as a condition whereby sufferers died in childhood. However, the current median survival age of 30 and a predicted median survival age of 40 for those born with the disease over the last decade ensure that families members will assist hospital staff with treatment and care well into most patients' adulthood. AIMS: This study explores the perceptions and experiences of lay care-giving amongst parents and partners of adults with CF who were being treated at a specialist CF centre in England. METHODS: Thirty-one relatives of adults with CF were interviewed in their own homes using an interview topic guide. All interviews were audiotape recorded and transcribed verbatim. Analysis of data was assisted by ATLAS-ti, a software package for qualitative research. FINDINGS: Two main themes surrounding lay carers' role in treatment and care were identified. Firstly, the notion of lay carers giving 'expert' care, both in hospital and at home was recognized. Parents' expertise was greater than that of partners until the patient required intensive hospital interventions, when partner expertise increased. Secondly, the degree of lay carers' felt inclusion in the hospital consultation appeared to depend on the nature of their relationship with the patient and the patients' health state. CONCLUSION: Lay carers are routinely performing tasks for adults with CF that were once the remit of trained nurses. Families need higher levels of nursing and social support when certain treatments are used at home. Attention needs to be directed to how lay carers of adult patients can be included in hospital consultations.     

Listening to the voices of patients with cancer, their advocates and their nurses: A hermeneutic-phenomenological study of quality nursing care

This article presents the findings from a hermeneutic-phenomenological study looking at the meanings of "quality nursing care" through the experiences of patients with cancer, their advocates and their nurses. Twenty-five patients were interviewed from which fifteen also participated in two focus groups. Six patients' advocates participated in a focus group and twenty nurses were individually interviewed. The informants came from the three major hospitals in Cyprus which provide in-patient cancer care. Patients' advocates came from the two major cancer associations in Cyprus. Having analysed the data, seven major themes were identified: receiving care in easily accessible cancer care services, being cared for by nurses who effectively communicate with them and their families and provide emotional support, being empowered by nurses through information giving, being cared for by clinically competent nurses, nurses addressing their religious and spiritual needs, being cared for in a nursing environment which promotes shared decision-making, and patients being with and involving the family in the care. These findings stress the need to integrate these aspects in the care of patients with cancer. In doing so, nurses will need support and adequate training in order to acquire the relevant skills towards better caring for the patients.     

Discharge planning for children with heart disease

Almost all children with heart disease are successfully cared for at home by their parents. Pediatric cardiovascular nurses play a major role in preparing parents to meet their child's medical needs, in aiding families to cope with a chronic condition, and in encouraging normal growth and development for their young patients. Through assessment, collaboration with other members of the health care team, planning with the family, teaching, counseling and supportive interventions, and evaluating care, nurses assist in a smooth transition to home and appropriate use of community resources.     

Living with terminal illness: patient and family experiences of hospital end-of-life care

AIM: The study explored terminally ill patients' and their families' experiences of hospital end-of-life care. DESIGN: A qualitative approach--interpretive phenomenology--was applied prospectively. Sample and setting. Ten patients and their closest family members were recruited in one Swiss university hospital. METHODS: Data collection included repeated observations, conversations with patients, and interviews with family members. FINDINGS: People led unique lives; when a terminal illness intruded and during hospital stays, they continued to live their particular life. The hospital was experienced differently, as prison, heaven, or necessary sojourn. A caring stance of the professionals was crucial to patients' and families' sense of being well cared for. When care providers lacked skills or did not recognize patients and family members as persons, they suffered. In contrast, adequate care interventions improved their quality of life. CONCLUSIONS: The experience of being in the hospital cannot be separated from patients' and families' life stories.     

A mixed method study to compare use and experience of hospital care and a nurse-led acute respiratory assessment service offering home care to people with an acute exacerbation of chronic obstructive pulmonary disease

BACKGROUND: Over the past 10 years hospital at home schemes for the treatment of an acute exacerbation of Chronic Obstructive Pulmonary Disease have proliferated throughout developed countries. For selected patients treatment at home is no less advantageous in terms of readmission rates and length of stay than treatment in hospital. Although care at home might seem to be a more desirable option than admission to hospital, little is known about care preferences and how people exercise service choice. OBJECTIVES: 1. to determine patients' recent use of and satisfaction with health care services during exacerbations of Chronic Obstructive Pulmonary Disease. 2. To determine and compare patients' and families' perceived future care preferences. 3. To complete an in-depth exploration of care experiences and preferences with a subset of respondents and their families. DESIGN: A mixed method design was used consisting of a postal survey and in-depth qualitative interviews with a subset of questionnaire respondents. SETTING: An outreach service provided by a large university hospital within Scotland, UK. PARTICIPANTS: One hundred and four out-patients registered with the Acute Respiratory Assessment Service and who had experienced hospital inpatient care during the past year, and their families. A subset of respondents was invited to take part in qualitative interviews. RESULTS: The majority of respondents indicated a preference for the home care service, and this was positively associated with high coping skills. There was a strong relationship between personal and family preferences. There was no linear relationship between a clinical measure of severity of lung disease and service use or care preferences. Results from the qualitative interviews endorsed and explained these findings. CONCLUSIONS: A range of factors combined to influence service use at a particular point in time, implying a need for increased self-management support from nurses and increased service provision.     

To provide care and be cared for in a multiple‐bed hospital room

Aims: To illuminate patients’ experiences of being cared for and nurses’ experiences of caring for patients in a multiple‐bed hospital room. Background: Many patients and healthcare personnel seem to prefer single‐bed hospital rooms. However, certain advantages of multiple‐bed hospital rooms (MBRs) have also been described. Method: Eight men and eight women being cared for in a multiple‐bedroom were interviewed, and two focus‐group interviews (FGI) with 12 nurses were performed. A qualitative content analysis was used. Results: One theme –Creating a sphere of privacy– and three categories were identified based on the patient interviews. The categories were: Being considerate, Having company and The patients’ area. In the FGI, one theme – Integrating individual care with care for all – and two categories emerged: Experiencing a friendly atmosphere and Providing exigent care. Both patients and nurses described the advantages and disadvantages of multiple‐bed rooms. The patient culture of taking care of one another and enjoying the company of room‐mates were considered positive and gave a sense of security of both patients and nurses. The advantages were slight and could easily become disadvantages if, for example, room‐mates were very ill or confused. The patients tried to maintain their privacy and dignity and claimed that there were small problems with room‐mates listening to conversations. In contrast, the nurses stressed patient integrity as a main disadvantage and worked to protect the integrity of individual patients. Providing care for all patients simultaneously had the advantage of saving time. Conclusions: The insights gained in the present study could assist nurses in reducing the disadvantages and taking advantage of the positive elements of providing care in MBRs. Health professionals need to be aware of how attitudes towards male and female patients, respectively, could affect care provision.     

Patients' perceptions of spirituality and the nurse as a spiritual care provider

This qualitative study explored patients' perceptions of spirituality and of the nurse as a spiritual care provider. Semistructured interviews were conducted with 8 adults older than 21, who were living at home, and had been discharged from the hospital within the past 3 months having had at least a 5-day length of stay. Participants agreed that during their hospitalization, nurses were kind and caring but these behaviors were not perceived as spiritual care. Study findings suggest that patients do not perceive spiritual care within the role of nursing and therefore they did not share their spiritual concerns with nurses. Study findings are limited by sample size; however, implications for practice are that nurses need to be aware of a patient's spiritual needs to provide spiritual care.     

Patients and families go on with life when a terminal illness enforces hospitalization: an interpretive phenomenological study

This interpretive phenomenological study explored patients' with a terminal illness and their family members' experiences of hospital end-of-life care. Findings show that patients and families led unique lives, and even when a terminal illness intruded and enforced a hospital stay, they held on to familiar practices. Patients and family members felt best cared for when healthcare providers supported them in their endeavors to go on with their usual life as much as possible. To achieve this, professionals are challenged to recognize patients and family members as persons and to integrate the latter's lived experiences in their care interventions.     

What does it mean to live with a congenital heart disease? A qualitative study on the lived experiences of adult patients.

BACKGROUND: Adults with congenital heart disease constitute a relatively new and continuously growing patient population. In addition to medical problems, patients perceive specific psychosocial concerns that influence their lived experiences and quality of life. AIM: This study aimed to explore the lived experiences of adult congenital heart disease patients. METHODS: Unstructured, in-depth interviews were performed with 12 patients, aged between 25 and 40 years and suffering from moderate or severe heart defect (tetralogy of Fallot, transposition of the great arteries). Interviews were tape recorded and transcribed verbatim. Data were analyzed using Grounded Theory procedures. RESULTS: Feeling different was the central theme of the patients' lived experience, as they are faced with physical limitations and visible signs due to the heart defect. The experienced discordance between their world and healthy individuals' world implies that patients struggle constantly with themselves and with their environment to be accepted as normal. The feeling of being different was influenced by attitudes of the environment, health care, and patient's personality. Moreover, it determined the perceived impact of the disease on the patient's daily life. CONCLUSION: This study shows that normalisation is the most important process when dealing with patients suffering from a congenital heart disease.     

Dying well: nurses' experiences of 'good and bad' deaths in hospital

Aim: This paper reports a study investigating hospital nurses' experiences of death and dying. BACKGROUND: Despite advances in medical science and health care, together with the push towards individualizing approaches to patient care in the developed world, significant variation in the care of dying patients still exists. The international issues relating to differing types of death reveal both its complexity and diversity, with evidence of 'good death' experiences largely focused on hospice experiences, and a lack of research on death in general hospitals. METHOD: In-depth interviews were conducted in 1999 with a convenience sample of 29 Registered Nurses in the United Kingdom based on their hospital death experiences. Semiotic analysis was used to identify the 'deep structures' that underlie and form part of cultural communication as a way of understanding how nurses made sense of death. Data interpretation was enhanced through the use of a typology of 'good and bad deaths'. FINDINGS: The findings suggest that different experiences of death are based on the extent to which nurses were able to exert control over the dying process. The management of death in hospital is a major source of conflict for nurses. Good and bad death experiences were constructed according to their impact on the sentimental order of the ward, the intangible, but real patterns of mood that influenced nurses' feelings. Moreover, good and bad deaths focused less on patients' needs and the dying process and more on the death event and nurses' abilities to manage organizational demands. CONCLUSION: There is a need to improve communication with patients and families about diagnosis and prognosis to ensure that effective communication takes place and 'blocking behaviour' is avoided. The findings also challenge practitioners to focus attention on death as a process, and to prioritize patients' needs above those of the organization. Moreover, there is the need for guidelines to be developed enabling patients to have a role in shaping events at the end of their lives.     

Patients' experiences of acquiring information related to genomics: A pilot study

Health care professionals recognize that nurses will need to provide a significant proportion of patient education regarding genomics and health care. The research question investigated involved determining factors most important in facilitating patients' understanding of the relation between genomics and their health care status and to examine the quality of the current patient education experience. Methodology involved conducting semistructured interviews with a sample of eight adults diagnosed with congenital heart defects or hypertrophic cardiomyopathy being seen as outpatients. Interviews were tape recorded and transcribed. Data analysis included studying the interviews for compelling themes related to the patient education process. By identifying desirable elements of genomics patient education, future interventions can be adapted to maximize patients' learning experiences.     

Thinking of the future and walking back to normal: an exploratory study of patients' experiences during recovery from lower limb fracture

Thinking of the future and walking back to normal: an exploratory study of patients' experiences during recovery from lower limb fracture ¶ Admission to hospital following a traumatic lower limb fracture is undoubtedly a stressful life event; however, few studies have detailed this from the patient's perspective. By exploring patients' experiences of hospitalization with lower limb trauma, this study aimed to explicate some of the factors impinging on the recovery trajectory. Patients' perceptions of the events influencing their strategies for coping with stress, hospitalization and temporary incapacity were investigated using a qualitative methodology. A convenience sample of nine patients was recruited from an orthopaedic ward in a district general hospital in Wales. The respondents used health diaries to document their recovery for up to 6 weeks after emergency surgery. These diaries were validated and supplemented by semi-structured interviews. Following their traumatic injuries, our respondents were subjected to a variety of stressors and uncertainties. They coped with this period of uncertainty by positive attempts to gain control over their situations, guided by an over-riding desire to 'return to normal' and assisted by the caring attributes of their nurses. From the experiences and events documented, this study was able to identify several stressors which could have been mitigated by optimization of the technical aspects of care, including the management of pain.     

Respiratory syncytial virus morbidity and mortality estimates in congenital heart disease patients: a recent experience.

OBJECTIVE: To determine recent morbidity and mortality rates from respiratory syncytial virus infection in a pediatric congenital heart disease population. DESIGN: Retrospective cohort study design. SETTING: The C. S. Mott Children's Hospital, University of Michigan Medical Center. PATIENTS: A total of 740 pediatric patients hospitalized at the University of Michigan Medical Center for symptomatic respiratory syncytial virus infection, of whom, 79 patients had clinically important congenital heart disease. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We retrospectively examined the charts of 740 patients hospitalized at our children's hospital from July 1, 1983 to June 30, 1990 with symptomatic respiratory syncytial virus infection to assess morbidity and mortality outcomes. Seventy-nine patients had congenital heart disease and 40 of these patients had pulmonary hypertension. For the entire cohort and a subset of patients with community-acquired infection, those patients with congenital heart disease had longer durations of hospitalization and greater need for, and days of, both intensive care and mechanical ventilation than patients without congenital heart disease. Mortality risk for respiratory syncytial virus community-acquired infection was not different for congenital heart disease vs. noncongenital heart disease patients (0.0% vs. 0.2%; p = 1.00). When examining only patients with congenital heart disease, those patients with pulmonary hypertension had increased hospital days and greater intensive care and mechanical ventilation durations compared with patients without this diagnosis. The overall mortality rate was low and was equally low for congenital heart disease groups with or without pulmonary hypertension (2.5 vs. 2.6). For community-acquired illness, no mortality was found in either congenital heart disease group. When the cohort of congenital heart disease patients was divided into pre- and postribavirin administration eras, no differences in mean hospital duration, ICU days, and mechanical ventilation days were noted. Of the 79 congenital heart disease patients, only two died during their hospitalization in which respiratory syncytial virus infection occurred. Both patients had nosocomial-acquired respiratory syncytial virus and both were from the postribavirin administration cohort. One of these two patients had received antiviral therapy. Neither death was secondary to respiratory syncytial virus respiratory failure (based on pathologic examination). CONCLUSIONS: We conclude that respiratory syncytial virus mortality risk in pediatric patients with congenital heart disease is less than the risk reported a decade ago. Respiratory syncytial virus infection in congenital heart disease patients with pulmonary hypertension is associated with increased morbidity but not increased mortality rates. The markedly decreased respiratory syncytial virus mortality risk in patients with congenital heart disease currently experienced is likely secondary to improvements in intensive care management and advances in the surgical correction in this population rather than antiviral therapy.     

Parent-nurse interactions: care of hospitalized children

BACKGROUND: An essential component of quality nursing care is nurses' ability to work with parents in the hospital care of their children. However, changes in the health care environment have presented nurses with many new challenges, including meeting family-centred care expectations. AIM OF THE PAPER: To report a research study examining the experiences of parents who interacted with nurses in a hospital setting regarding the care of their children. METHODS: A qualitative approach was employed for this study. In-depth audiotaped interviews were conducted with eight parents representing seven families. Data collection was completed over a 7-month period in 2001. FINDINGS: Parents characterized their experiences with nurses caring for their children as interactions, and identified the elements of establishing rapport and sharing children's care as key to a positive perception of the interactions. These elements were influenced by parental expectations of nurses. Changes in nurses' approach were reported by parents as the children's conditions changed. CONCLUSION: Nurses were able to work with families in the hospital care of their children in ways that parents perceived as positive. However, in parents' views, their interactions with nurses did not constitute collaborative relationships. A deeper understanding of these interactions may provoke new thinking about how to promote an agency's philosophy, and how nurses enact this philosophy in practice.     

Life with a left ventricular assist device: the patient's perspective.

BACKGROUND: Understanding the psychological experience of living with a life-sustaining device is necessary for developing individualized, supportive interventions for patients with a left ventricular assist device. OBJECTIVES: To describe patients' experiences with left ventricular assist devices, strategies for coping with prolonged hospitalization, and suggestions for individualized nursing interventions. METHODS: The phenomenology method of qualitative research was used. Data collection involved unstructured, open-ended interviews of 6 hospitalized subjects who had a pneumatic left ventricular assist device. RESULTS: Patients described coping strategies for prolonged hospitalization, including family support, religious convictions, and diversional activities. Data analysis suggests that critical care nurses can best support these patients by establishing trusting relationships, fostering independence, and incorporating humor into their care. CONCLUSIONS: Patients awaiting cardiac transplantation coped effectively with prolonged hospitalization with a life-sustaining device in place. Spirituality, humor, and strong family relationships contributed to their positive outlook.