Community provision for informal live-in carers of stroke patients

Stroke is common and disabling. Most stroke patients are cared for at home by informal carers. This study of informal carers of stroke patients measured service provision and satisfaction with different aspects of community care received by these carers. Dissatisfaction was expressed with training and information provision for carers, communication between carers and community services, speed of response and coordination of community services, and perceived support. Problems of information provision were most marked for those patients with most disability and/or older carers.     

Evaluation of a short-term group intervention for informal carers of patients attending a home palliative care service

Despite evidence of high psychological distress and unmet needs, evaluated interventions for informal caregivers in palliative care are few. This study involved an observational outcome evaluation of attendees, and a comparison group, in specialist home palliative care. The measures included carer psychological status and patient physical status at baseline, 8 weeks, and 20 weeks. Qualitative data were collected regarding content, satisfaction with, and impact of intervention. Process data described the uptake, resources, and group activity. The intervention combined informal multiprofessional teaching with facilitated peer exchange and support, and was delivered over 6 sessions of 90 minutes per week. The uptake rate was 25%; carers were less likely to accept if they were in paid employment (OR=0.26, P=0.06), and more likely to accept if they utilized avoidance coping (OR=1.13, P=0.04) or their patient had worse physical status (OR=2.1, P=0.03). Attendees described significant support and knowledge gains from the multiprofessional input and peer group. Most relied on social comparison processes to appraise their situation. Potential detection of significant effects on global psychological scores (i.e. anxiety, depression, and burden) using multivariate analysis was disallowed due to attrition. This acceptable and accessible intervention provided information and support; further outcome studies are needed for a range of interventions. Short-term interventions are unlikely to affect global psychological scores, and future evaluations should include additional time points of data collection to demonstrate support during attendance.     

Palliative care: the experience of informal carers within the Bangladeshi community

Optimal palliative care cannot be realized unless nurses have a full understanding of what the patient's family is experiencing. There is a gap in nursing knowledge related to informal care and ethnic minorities. The aim of this retrospective qualitative exploratory study was to investigate the experiences of Bangladeshi informal carers living in the UK, associated with caring for a dying relative. Semi-structured interviews using an interpreter were carried out and patient notes were examined. Four categories emerged from the data: caring, support, communication, and home and family. In addition to the demands and stresses caused by their relative's symptoms and the knowledge that they were dying, the Bangladeshi carers experienced communication barriers, isolation and anxieties regarding visas and housing--yet all were uncomplaining about their situation. Palliative care nurses working with Bangladeshi families need to be aware of the additional stresses that these families may experience and be able to offer strategies to enable them to cope with them.     

Identifying the concerns of informal carers in palliative care.

The purpose of this preliminary study was to identify the perceived support needs of informal carers (families and friends) of cancer patients receiving palliative care in the community. Changes in policy mean that increasing numbers of palliative care patients receive the majority of their care at home. This potentially places heavy demands on families and friends. Thirty-nine informal carers were recruited from two areas in southern England. Data were obtained on psychological morbidity (General Health Questionnaire), and caregiving burden (Carer Strain Index), and a semistructured interview was used to elicit data on perceptions of caring. Results indicate that 33 (84%) reported above normal levels of psychological distress and 16 (41%) experienced high levels of strain related to caregiving. Younger age and being female were found to be correlated with psychological morbidity and strain. Participants also reported life restrictions, emotional distress and limited support.     

The role of the primary care team in support of informal carers

Caring for an elderly, frail or disabled person has effects on physical and psychological health as well as financial and social consequences. There are 6 million informal carers in the UK and the primary care team together with other community services is expected to provide the support they need. However, most primary care team members feel ill equipped to do so and there is very little evidence about which interventions are effective. This article reviews the reasons for this problem and suggests a strategy primary care team members could adopt until new evidence about effective strategies is available.     

Evaluating the needs of informal carers

Abstract

Sore mouth is a common symptom in cancer patients which impacts negatively on their quality of life. This audit was performed on consecutive admissions to an in-patient palliative care unit in Perth, Western Australia to assess the incidence of mouth soreness and the associated microbiological culture and polymerase chain reaction (PCR) results. Of patients, 24% (20/83) recorded a sore mouth. The most common organism isolated was Candida spp. (n = 8), followed by herpes simplex virus type I (HSV; n = 5), Staphylococcus aureus (n = 2) and Klebsiella pneumoniae (n = 1). Only one of the five patients with HSV had the classic 'cold sore' lesion with crusting and ulceration on the lip. The others had non-specific findings such as erythema (n = 3), coated tongue (n = 2) or dry mouth (n = 3). The results highlight a greater incidence of HSV than previously reported and suggest further work to be performed on the aetiology and treatment of sore mouth in hospice patients.     

Managing anxiety in ICU patients: the role of pre-operative information provision

Hospital-induced patient anxiety and coping mechanisms are discussed. The value of giving pre-operative information to reduce anxiety in elective admissions to intensive care unit is discussed. Recommendations are given based on the literature evidence to aid service and practice development.     

A longitudinal study of home care clients and their informal carers

The objective of the longitudinal study was to monitor physical and cognitive changes in a population of 330 older people being supported at home by health services. The participants were 75 years and older and classified as having moderate-to-high needs. A total of 210 primary informal carers were recruited to determine their specific needs and how they coped as dependency levels of their care-recipients changed. Data were collected using six different tools. Two questionnaires were mailed out to participating carers. Assessments of care recipients were carried out at three sampling points over the study period. The clients showed a significant increase in physical dependency and an overall increase in cognitive impairment over time. Only 32% of carers lived with care recipients, and changes in dependency, cognitive changes, lack of respite and performing activities of daily living were all major stressors for informal carers. The needs of informal carers are reported and discussed in the context of recommendations of the Commission on the Future of Health Care in Canada.     

Developing service provision for patients in primary care

This article outlines the government's changes to the way that primary and community health services will be commissioned and provided. It also discusses the opportunities that exist for nurses to lead and develop services for the benefit of patients in the implementation of changes.     

Assessing palliative care needs: views of patients, informal carers and healthcare professionals

AIM: This paper reports a study to assess the palliative care needs of the adult population served by a healthcare provider organization in Northern Ireland from the perspectives of patients, informal carers and healthcare providers. BACKGROUND: Assessing palliative care need is a key factor for health service planning. Traditionally, palliative care has been associated with end-of-life care and cancer. More recently, the concept has been extended to include care for both cancer and non-cancer populations. Various approaches have been advocated for assessing need, including the exploration of professional provider and user perspectives of need. METHOD: Semi-structured qualitative interviews were undertaken with a purposive sample of patients and lay carers receiving palliative care services (n = 24). Focus groups were also conducted with multi-professional palliative care providers (n = 52 participants) and face to face interviews were undertaken with key managerial stakeholders in the area (n = 7). The focus groups and interviews concentrated on assessment of palliative care need. All the interviews were transcribed verbatim and analysed using Burnard's framework. FINDINGS: Professional providers experienced difficulty in defining the term palliative care. Difficulties in communication and information exchange, and fragmented co-ordination between services were identified. The main areas of need identified by all participants were social and psychological support; financial concerns; and the need for choice and information. All participants considered that there was inequity between palliative care service provision for patients with cancer and non-cancer diseases. CONCLUSION: All patients, regardless of diagnosis, should be able to access palliative care appropriate to their individual needs. For this to happen in practice, an integrated approach to palliative care is essential. The study methodology confirms the value of developing a comprehensive approach to assessing palliative care need.     

Clinical notes for informal carers in palliative care: recommendations from a random patient file audit

Although palliative care aims to support family members and informal carers, current evidence suggests that high levels of unmet need persist, and that this population is challenging to work with. This study aimed to 1) measure the proportion of patients that have an informal carer, 2) describe the clinical notes data on existing needs and coping, 3) measure the completeness of assessment data recording, 4) appraise the utility of existing informal carers' sections in the patient files, and 5) make recommendations for improvement. An audit was conducted reviewing 145 closed patient files. Of these, 100 had identifiable informal carers (69.9%). Although patient data was complete, data was severely lacking on their informal carer. Diverse coping strategies were described, and the primary need was for finance and advice about state welfare payments (n=64). The findings suggest a need for files to identify and record informal carers as potentially distinct from family members, promote assessment data completion for informal carers on a par with that of patients, and to develop systematic approaches to systems that maximize utility and incorporate multiprofessional input into the development of clinical notes.     

A qualitative analysis of the information needs of informal carers of terminally ill cancer patients

This article discusses issues relating to information arising from a qualitative study of the experiences of informal carers of terminally ill cancer patients. Qualitative data analysis, drawing on methods of literary criticism, revealed that information was a key area in carers' experience. The findings are presented in the context of needing to provide individualized care to every family and deal with information needs relating to the illness and prognosis. The question of who is in possession of what information is raised, and the effect that this can have on couples is discussed, together with the issue of false information which carers may receive. The discussion centres on the complexity of understanding carers' information needs and considers how these are affected by the context within which carers operate. The work of Glaser and Strauss on awareness contexts is discussed in this respect. Finally, the importance of the nurse's role as a sensitive mediator of information is considered.     

Study of information given by nurses for catheter care to patients and their carers

Patients who are to use a long-term indwelling urethral catheter, and their informal carers, require knowledge and information for its successful management. Education of both patients and carers regarding catheter care has been recommended but not always carried out in practice. This study has investigated the information given by 106 hospital and district nurses to patients who are to use an indwelling urethral catheter in the community, and their carers. It was concluded that the information given for catheter care was not comprehensive nor consistent and differed according to the nurse's location of work. The implications this has for nursing practice are a need for further education of nurses regarding catheter care and improved teaching of patients who are to use a long-term indwelling urethral catheter, and their carers.     

Sustaining complementary therapy provision in primary care: lessons from existing services

OBJECTIVE: To examine factors which sustain complementary therapy services in primary care in order to inform policy making in a context of rapid change. DESIGN: In-depth qualitative case studies, including semi-structured interviews with key informants. SETTING: 10 existing schemes of complementary therapy provision in primary care across England. RESULTS: GPs and complementary practitioners reported wide-ranging benefits from complementary therapy provision in primary care. However, they felt that their ability to sustain complementary therapy provision was mediated by a) funding, b) the need for research, and c) appropriate service delivery mechanisms. a) Many schemes were the result of and sustained by personal vision. As such they had negotiated a variety of funding sources over a considerable period, against a background perception that continued funding was uncertain. b) Most informants believed that more research was needed to provide a solid evidence base for service continuation and development, in particular clinical and cost-effectiveness work. c) The manner of service delivery, notably whether a service was located within a general practice or in a referral centre, was seen as having implications for the integration of practitioners and for patient access to services. CONCLUSIONS: Current complementary therapy provision in primary care has developed on an 'ad hoc' basis. In particular, the existence of GP fundholding in the 1990s, in which primary care physicians were able to purchase health services on a practice basis, facilitated the development of services in this way. Within the current Primary Care Group context, where purchasing decisions are made collectively by a group of general practices within a region, consideration needs to be given to both the continuity of schemes already in existence and to whether a more standardized approach to service development will be required to facilitate sustainable provision.     

Partnership nursing: influences on involvement of informal carers

Factors influencing family involvement in the care of children in hospital were explored in a survey of 243 inpatients in two hospitals Eighty-five per cent of the children were receiving some or all of their care from a family member, usually the mother Significant influences on the amount and type of involvement included acuity, type of illness, length of stay and the language spoken by the family Other social factors, such as distance from the hospital, number of dependent siblings, social class and ethnicity were not significant influencing factors in this population The influence of language on involvement, and conclusions from related literature, suggest that characteristics of the interaction such as communication and nursing style are more significant than social structural factors A typology of nursing approaches to informal carers is proposed which could apply beyond the paediatric context Further work is needed to test the hypothesis that such approaches are characterized by nurses excluding the carer, or permitting, making assumptions about, or negotiating carer involvement     

A multi-professional short-term group intervention for informal caregivers of patients using a home palliative care service

Informal carers of home palliative care patients have high unmet needs. However, interventions for carers are few. This research-based short-term group intervention addresses the information and support needs of carers. Multiprofessional informal teaching is combined with peer support. The intervention was designed by integrating the findings from a qualitative study and the evidence on needs and interventions, in order to address the key issues of feasibility, acceptability, and accessibility. Qualitative data from attendees showed that identifying with other carers and validating feelings, asking questions of professionals, and providing each other with support and encouragement were valuable outcomes from the group.