Survey of carer satisfaction with the quality of care delivered to in-patients suffering from dementia

Quality assurance in British National Health Service provision stresses the importance of taking account of the consumer's viewpoint Elderly patients with dementia are not always able to contribute usefully to satisfaction surveys Therefore, their carers' views were sought in order to assess the quality of services offered to this client group Forty-one carers of patients discharged from the eight wards for the elderly mentally ill in Leicestershire, England, were randomly selected Individual focused interviews were conducted in carers' own homes Both quantitative and qualitative data were obtained by use of a questionnaire designed to tap the patients'/carers' experiences from preadmission, through hospital stay to post-discharge Interviewees were asked to describe their favourable/unfavourable impressions of, and reactions to, all aspects of hospital care These interviews were tape-recorded Analysis of the data included quantitative measurements of scale ratings Grounded theory was used to analyse qualitative data A wealth of information was uncovered using this research technique Much that was positive about the service was elicited However, carers highlighted areas where they felt the quality of care could be improved within all the foci discussed Twenty-two recommendations for quality improvements in service provision were made in the report as a result of this survey     

South Asian patients' lived experience of acute care in an English hospital: a phenomenological study

Studies on utilization of hospital services by South Asian patients in the United Kingdom have consistently demonstrated levels of dissatisfaction with care in relation to meeting religious and cultural needs, although there are few studies on minority ethnic patients' utilization of acute hospital services. This study aimed to describe and interpret from the consumer's view the 'lived experience' of acute hospital care from the perspectives of South Asian patients and their family carers. The purposive sample of 10 patients and six carers consisted of 13 females and three males (five Hindus, six Muslims and five Sikhs) who were interviewed at home 2 to 3 weeks after discharge from hospital. Data were gathered through semi-structured interviews that were tape recorded and transcribed. A phenomenological approach was used, and data were analysed using the principles of Heideggerian hermeneutics. Five themes were identified, ranging from feelings of satisfaction with care, unhappy about the service, fitting-in strategies and post-discharge coping mechanisms. Patients seemed to want to cause as little disruption as possible to the ward environment and tried to fit in to what they refer to as an 'English place'. The findings, although not generalizable, offer important insights into how South Asian patients survive their journey through their hospital stay and have implications for the provision of nursing care for minority ethnic patients.     

Use of the Internet by patients: not a threat to nursing, but an opportunity?

The Internet poses numerous challenges for health care professionals. A significant one is the way in which patients, clients and carers now have access to large amounts of unfiltered, specialized health information, much of which was, hitherto, solely the province of the professionals. The specific problems that this poses, in terms of the effect that it might have on the therapeutic relationship, are discussed, along with some of the proposed solutions, such as the National Electronic Library for Health initiative and NHS Direct Online. Since this change is inevitable, it is recommended that nurses should seek to build on their role as educators of patients and carers. One of the ways in which they can do this is by guiding patients' and carers' use of the Internet, and helping them to evaluate the information that they find.     

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.     

A qualitative study of the information needs of acute myocardial infarction patients, and their preferences for follow-up contact after discharge.

BACKGROUND: Several studies have claimed that patients have unmet information needs after discharge following acute myocardial infarction (AMI). Our overall goal is to develop a post-discharge nursing intervention program to provide patients with appropriate information and support in contexts where existing follow-up services are poorly developed. AIMS: To explore the information needs of inpatients with AMI and their preferences for follow-up contact after discharge from hospital. METHODS: Fourteen AMI patients aged 42-69 years participated in one of three focus groups, held between 3 and 5 months after their discharge. RESULTS AND CONCLUSIONS: The findings are grouped into three themes corresponding to the major topics in the interview guide: the hospital stay, coming home, and patients' follow-up preferences. The data support the findings of previous studies that there is a systemic failure to meet patients' in-hospital and post-discharge information needs. Most importantly, our participants' follow-up preferences favoured open telephone lines and telephone follow-up. The results of this study provide some of the knowledge that is necessary to improve patient information and support following AMI.     

An investigation of family carers' needs following stroke survivors' discharge from acute hospital care in Australia

Purpose.?To expand understanding of informal stroke care-giving, validated tools previously used in Hong Kong and in the UK were used with Australian stroke carers to assess their stroke-related knowledge, perceived needs, satisfaction with services received and sense of burden after stroke patients' discharge home from acute hospital care.

Methods.?Record audit and telephone interviews with two cohorts of 32 carers recruited in Sydney and Brisbane 1 and 3 months post-hospital discharge, using validated scales and open questions in May–July 2006.

Results.?Female carers, those with prior care-giving responsibility, and those interviewed at three compared to one month post-discharge reported greatest needs and burden from the care-giving role; needs alone significantly predicted burden. Getting information and being prepared for life after discharge were central concerns. Some felt this was accomplished, but inadequate information giving and communication mismatches were apparent.

Conclusions.?Service providers need to develop partnership working with stroke families and provide a network of services and inputs that cut across conventional boundaries between health and social care, public, private and voluntary organisations, with care plans that deliver what they delineate. Stroke care-givers have common issues across countries and healthcare systems; collaborative research-based service development is advocated.     

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.     

Schizophrenic patients' image of their carers and the carers' image of their patients: an interview study

Schizophrenic patients' image of their carers and the carers' image of their patients: an interview study
In order to gain a deeper understanding of how long-term adult schizophrenic patients perceive themselves, their carers and the care they receive in relation to how the carers perceive their patients, themselves and the care they provide, a narrative interview study, analysed using a method inspired by Ricoeur's philosophy, was performed. The main findings of this study were that both patients and carers who saw the patients as a subject stressed the confirming relation between the parties as an essential element of the care. The carers who saw the patient as an object did not share this opinion. They had a more restricted point of view, seeing their goal only as providing a variety of care activities and keeping the schizophrenic patients at the hospital. This study also points out that confirmation is provided in the meeting between patient and carers.     

Components of a proper hospital discharge for elders

SIGNIFICANCE: Effective discharge planning is a vital link in continuity of care for elders. Previous studies identify problems with planning for elders' discharge from the hospital and problems elders encounter managing care post-discharge. However, little attention has been given to identifying effective discharge planning processes. Explicating the components of effective discharge planning is critical to replicate the process in other health care settings and predict post-discharge outcomes. PURPOSE: The purpose of this study was to identify the components of effective discharge planning for elders and factors that impede planning. METHODS: Ethical approvals were obtained from the University and National Health Service (NHS) Trust. Qualitative methods were used and data were collected from two wards in a 78-bed geriatric rehabilitation hospital that was part of a National Health Service Trust serving Southwest London. Data included semi-structured interviews and documents related to discharge planning, care delivery, and community resources. A total of 24 semi-structured interviews were conducted with health care professionals who were part of the hospital's multidisciplinary team, those affiliated with the Community Trust that provided aftercare, elders, and family carers. RESULTS: Participants consistently used the term "proper discharge" when referring to effective discharge planning. The multidisciplinary team comprised a vital context for a proper discharge. The findings indicated that three circles of communication were central in a four stage discharge process. Different circles of communication were key at different stages. CONCLUSIONS: The findings provide insights for educating nurses about effective planning practices and examining the global significance of impediments to a proper hospital discharge.     

Experiences of care: perspectives of carers of adults with traumatic brain injury

This paper describes the results of a survey that explored the experiences of carers when accessing rehabilitative services alongside their family member with a moderate-severe TBI. The 184 carers who completed these surveys reflected retrospectively on the care they received. The results of this study indicated that 61% of the carer respondents recollected accessing inpatient rehabilitation following their acute care. However, following inpatient discharge only 33% of carers reported receiving ongoing services. One quarter of carers stated they received inadequate information while transitioning through their healthcare journey and fewer than 20% of carers recollected receiving any formal support service. The results of this study showed that as carers transitioned through the healthcare journey with their family member with TBI, health services progressively declined. As this occurred, carers' satisfaction with services reduced, while their responsibilities for caring increased. This trend is concerning given the needs of carers have been shown to change over time and increase if not addressed. This paper describes both carer experience following TBI in Australia and encourages clinicians to advocate for carers needs when planning and providing rehabilitation services.     

A review of the information and support needs of family carers of patients with chronic obstructive pulmonary disease

Aims and objectives. The objectives of this narrative review were to identify: (1) The information and support needs of carers of family members with chronic obstructive pulmonary disease; (2) appropriate interventions to support carers in their caregiving role; (3) information on carers’ needs as reported in studies of patients living with COPD in the community. Background. Chronic obstructive pulmonary disease is a major health problem in the UK resulting in significant burden for patients, families and the health service. Current National Health Service policies emphasise, where medically appropriate, early discharge for acute exacerbations, hospital‐at‐home care and other models of community care to prevent or reduce re‐hospitalisations of people with chronic conditions. Understanding carers’ needs is important if health care professionals are to support carers in their caregiving role. Design. A narrative literature review. Methods. Thirty five papers were reviewed after searching electronic databases. Results. Few studies were identified which addressed, even peripherally, carers’ needs for information and support, and no studies were found which described and evaluated interventions designed to enhance caregiving capacity. Several studies of hospital‐at‐home/early discharge, self care and home management programmes were identified which included some information on patients’ living arrangements or marital status. However, there was little or no detail reported on the needs of, and in many cases, even the presence of a family carer. Conclusions. This review highlights the dearth of information on the needs of carers of chronic obstructive pulmonary disease patients and the need for future research. Relevance to clinical practice. There is little research based knowledge of the needs of carers of chronic obstructive pulmonary disease patients and interventions to assist them in providing care. This knowledge is critical to ensure that carers receive the information they need to carry out this role while maintaining their own physical and emotional health.     

Carers' reflections about their video-recorded interactions with patients suffering from severe dementia

Stimulated recall interviews were used in connection with carers' video-recorded interactions with patients suffering from severe dementia before, during and after a 1-year intervention involving supervision for individualized nursing care. The aim was to illuminate carers' reflections on their everyday life with the patients, and to find out if any changes took place across the intervention. A phenomenological-hermeneutic approach was used in the analysis, which revealed that carers' reflections were focused on the carers themselves, on the patients, on context and on the work itself in the shared everyday life. After repeated stimulated recall interviews, together with supervision every month, an improvement in carers' ability to verbalize their reflections and an awareness and knowledge about their own influence on care quality were seen. The interdependence between carers and patients made it necessary for the carers to cope with many complicated here-and-now situations, and in their reflections the carers kept coming back to their efforts to maintain a sense of dignity for the patients as well as for themselves. Reflection through stimulated recall seems to be an important tool for carers in dementia care to facilitate understanding and to help them learn through lived experience, thus developing their skills in nursing care.     

Lung cancer health care needs assessment: patients' and informal carers' responses to a national mail questionnaire survey.

The objective of this study was to describe patients' and informal carers' perceptions of care received and services offered following a diagnosis of primary lung cancer. We prepared a prospective, national, mail questionnaire survey of 466 patients with a diagnosis of primary lung cancer and a lay carer of their choice. The setting was 24 randomly chosen hospitals throughout the UK, from a range of urban (n = 11) and rural settings (n = 13). The majority (76%/159) of responders were recipients of care from cancer units. Two hundred and nine patients (45%) with primary lung cancer and 70 (15%) lay carers completed questionnaires. The main results that we found were that key areas of unmet need were most apparent during periods away from acute service sectors, with as few as 40% of patients reporting having received as much help as they needed from community services. The greatest onus of care for patients fell to lay carers, but only 29% of patients identified their lay carers as having needs in relation to their illness. Where patients received all their diagnostic tests in one hospital they were significantly more likely to wait less time between first seeing their general practitioner (GP) and being told their diagnosis (P = 0.0001) than patients who had to attend more than one hospital during their diagnostic work-up period. Fifty per cent of patients reported experiencing some degree of breathlessness even at rest, but only 15% reported having received any advice on living with it. Less than a quarter (23%) of hospital consultants identified anxiety as a key problem for patients with lung cancer, but 66% of patients identified it as such. Hospital staff largely overlook the needs of informal carers, who derive support from a small, mainly community oriented group of professionals, but accessing help is problematic and is dependent on local resources and a need to be proactive. Our conclusions are that developments in service provision for patients with lung cancer and their informal carers need to focus on six key areas: development of strategies to encourage patients to present earlier to their GP; ongoing evaluation of rapid diagnostic clinics; development and evaluation of a lung cancer care coordinator role; evaluation of innovations in delivery of nursing care in the community; development of local guidelines to facilitate equitable access to palliative care and social services; and evaluation of supportive strategies targeted at lay carers.     

Providing appropriate information to patients and carers following a stroke

Providing appropriate information to patients and carers following a stroke This paper reports on a study which sought to identify the information needs of patients and their informal carers at various stages post-stroke with the aim of developing a database from which individualized information packages could be provided. The study used in-depth qualitative interviews with a total of 31 interviewees (both patients and carers) to explore information needs at three different points post-stroke: during hospitalization; up to 1 month post-discharge; and 2–12 months post-discharge. The information needs identified related to: recovery, treatment and prognosis; practical caring tasks; social activities; and resources available in the community. The study indicated that the information needs of patients and carers following stroke are not currently met and a desire for individualized information was identified. It is concluded that it may not be possible to meet patients' and carers' desire for information about recovery and prognosis but that a customized database covering the other areas highlighted by this study would facilitate improved information provision. It is anticipated that the process of providing such packages would improve communication within the rehabilitation team.     

Health education. Heart surgery

By means of a literature review of nursing articles, the authors aim to evaluate the importance of educational programmes before and after cardiac surgery, to assess the advantages and drawbacks of these programmes and to evaluate the need for following-up patients and their carers after being discharged from hospital. Health Education and cardiac surgery: Delivering information following cardiac surgery is an essential task, not only to achieve a behavioural change and the development of patients' self-care attitudes but also to reduce their anxiety. It is also essential to educate family members as they are the most importance source of physical and emotional support following surgery. Issues about in-hospital teaching programmes: Despite the numerous benefits of in-hospital teaching programmes, the actual tendency to shorten hospitalisation length in association with the high levels of anxiety, impede patients and carers' learning. Some studies suggest that these educational programmes have not completely achieved the task of preparing patients and their families to face the early recovery. Education during the early recovery: The authors highlight those studies that have focused on patients and their carers' needs for information following discharge from hospital. Results from these studies show the need for following-up patients and their carers at this period. Educational programmes can extent and reinforce the information provided at hospital.     

Discharge Planning: Comparison of Patients'and Nurses'Perceptions of Patients Following Hospital Discharge

Planning for hospital discharge is an important component of nursing. Results are presented of a study to determine how well primary nurses predict the functional ability of their patients following discharge and to assess whether patients and nurses agree about their patients' understanding of the post-discharge treatment plan. Comparing nurses' predictions with patients' reports of functional status 2 months following discharge, we found that nurses consistently underestimate the functional ability of their patients. Comparing nurses' perceptions of their patients' understanding of their post-discharge treatment plan with patients' reports about their understanding, significant differences were found between nurses' perceptions and patients' reports. Nurses' perceptions were that patients were much more knowledgeable than their patients reported. These preliminary data suggest that hospital discharge planning is an area for further investigation and intervention. Nurses should explore new paradigms for patient education as lengths of hospital stay decrease and care shifts from acute care to community care.