Managing to care: the importance of using existing information to guide service provision for informal carers

All managerial deciions are taken on the basis of the information. It is important that managers use appropriate information to base their decisions upon about service provision to ensure erhcient use or resources. This basic premise serves as a framework for examining how quantitative and qualitative information can be of help to nurse managers in taking these decisions in the context of developing services for informal carers. The current emphasis on surveys as a means of assessing client need is questioned, and it is suggested that a wealth of evidence, relating to the experience of carers, already exists. Examples of accounts which express the needs of informal carers are presented and their utility, in terms of highlighting the carers' perspective, is discussed to reinforce the importance of utilizing this information. The paper concludes that nurse managers can use these sources as a basis for decision-making in the area of service provision and this may result in a more effective use of resources through a needs-based approach.     

Service needs of stroke survivors and their informal carers: a pilot study

This pilot study prepares the way for a controlled evaluation of counselling of disabled stroke survivors and their carers. It assesses feasibility of methods and outcome measures potentially useful in the main study. The study elicited information about the psychological, physical, social and service needs, and the feelings of stroke survivors and their informal carers. Twenty patients and their carers were interviewed separately in their own homes. Results describe research tools which were refined, and demonstrate several unmet needs in the psychosocial domain. The main findings were a requirement for more information about stroke and for counselling in relation to 'care' problems arising out of the disability of stroke disease and the changes in dependency produced.     

Meeting the psychological needs of community-living stroke patients and carers: a study of third sector provision

Purpose: To elucidate how community stroke staff in a major third sector organisation experienced their role and understood and responded to clients’ psychological needs. Method: In stage 1, three focus groups of 28 staff in total were recorded, transcribed and analysed using inductive thematic analysis. Themes were authenticated by new staff groups. In stage 2, these themes informed the construction of a questionnaire delivered through the organisation’s intranet by “Survey Monkey”. Results: Five themes emerged from the focus groups: background and context; perceptions of clients’ psychological issues; approaches to meeting psychological needs; the experience of working with psychological needs and sources of support; aspirations for future development. Four themes were used in constructing the questionnaire. Responses from 144 staff with diverse qualifications and experience were received; over half encountered 16 (of 35) psychological issues at least once per week. Stroke survivors’ needs predominated over carers’ needs. Skills used to address psychological problems were identified, also training and support needs and future aspirations. Support needs included information, training and access to specialist consultants. Conclusions: Psychological issues were central in the work of third sector community stroke staff; psychological skills were routinely used. Attention to means of supporting and developing these skills is required.

• Implications for Rehabilitation

• Service leaders and commissioners should be aware that third sector community stroke staff frequently deal with a diverse range of psychological issues and perceive psychological care as central.

• Service leaders should consider providing training in assessment and management of mood and cognition, risk assessment and management and basic counselling.

• Staff should be provided with access to specialist consultation and better information about psychological aspects of referrals.

• There is uncertainty about key methods for supporting the delivery of psychological care (supervision, mentoring and peer support) which requires consideration.

     

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.     

Good practice for keeping stroke patients and carers informed

Stroke patients and their carers can have many questions about the mental and physical effects of the condition, hospital procedures and treatments, and prospects for the future. This paper discusses issues involved in giving information to patients--some of whom may be experiencing serious communication problems--as well as those looking after them, and offers solutions.     

Advanced heart failure: impact on older patients and informal carers

AIM: This paper reports a study exploring the impact of advanced heart failure on the lives of older patients and their informal carers. BACKGROUND: Prognosis is poor in heart failure, with more than a third of patients dying within 12 months of diagnosis, and end-of-life symptoms are distressing and poorly controlled. Although end-of-life care for people with heart failure has received increased attention in recent years, there are still few data on the impact of advanced heart failure on the lives of patients and their informal carers. METHODS: Focused interviews were conducted with 10 older people with advanced heart failure and their nominated informal carer identified from one district general hospital in the United Kingdom (UK). Joint interviews were conducted with patients and carers in their own home. Thematic analysis was used to identify themes and subthemes. FINDINGS: Heart failure affected all aspects of the lives of patients and carers and, in particular, curtailed everyday activities. Patients were very concerned about the 'burden' their illness placed on their carer, who in all cases was their partner, although carers did not conceptualize the situation in this way. The socially isolating influence of the condition on both patients and carers was compounded by lack of professional input, and confusion about diagnosis was evident. Concerns about the future were common and, although few participants reported having been explicitly told about their prognosis, many made realistic statements about their limited life expectancy. CONCLUSIONS: This older cohort of people suffering from heart failure appears to have needs not unlike those of patients with 'terminal diseases'. When people are diagnosed with more familiar terminal illnesses, in particular cancer, they are given ongoing explanations, reassurance and support. Similar professional input is needed for patients with advanced heart failure and their carers.     

Experiences of informal carers providing nursing support for disabled dependants

This paper provides an account of the experience of a group of informal carers who provided nursing support for their physically disabled dependants. The project was designed to establish the extent to which carers are equipped to fulfil their role in terms of equipment, facilities, skills, levels of personal health and the extent of support available to them from agencies outside the home. The carers were found to be providing the majority of nursing support required by their dependants. This mainly involved carrying out tasks of personal care although, for some, more technical procedures were involved. The findings indicate there is scope for professional nurses to make a greater contribution to the support of informal carers, particularly by regular review of the nature and level of assistance which carers provide and by giving training in the skills which carers require.     

脑卒中患者的社区健康指导

目的探讨脑卒中患者的社区键康指导。方法选取40例脑卒中患者,以每周1次家庭访视和电话访谈相结合,对患者进行健康指导,后进行生活质量评估。结果40例患者均能遵从良好的生活方式,加强了服药依从性,提高了康复训练护理技能,加强了自身健康管理,提高了生活质量。结论通过对患者进行健康教育,指导其遵医嘱正规服药,培养良好的生活方式。持续家庭康复护理训练及自我健康管理对患者起到了良好的干预作用。     

健康教育视频在脑卒中照顾者中的应用

目的探讨应用视频对脑卒中照顾者进行健康教育的方法及效果。方法收集并制作脑卒中健康教育及康复指导的视频,使用移动护理车车载电脑在床边护理过程中进行视频播放,对脑卒中照顾者实施健康教育。回顾性比较采用移动护理车车载视频系统结合传统方法进行健康教育的脑卒中照顾者和进行传统健康教育的脑卒中照顾者的照顾能力。结果在传统健康教育的基础上采用视频宣教,脑卒中照顾者的照顾能力高于以往传统健康宣教后的照顾者(P<0.05)。结论视频宣教方式调动了患者及照顾者接受健康教育的积极性,保证健康教育内容传递的准确性,提高了照顾者的照顾能力。     

Care for carers of stroke patients: evidence-based clinical practice guidelines.

Caregivers of stroke patients provide informal care ranging from physical help to psychosocial support. As a result, these caregivers may experience high levels of burden, associated with characteristics of the patients and of the caregivers themselves. This burden can result in a deterioration of the caregivers' health status, social life and well-being. The caregivers may thus be seen as colleagues of professional caregivers in sharing the care for the patient, but they should also be seen as "patients" having problems and special needs themselves. In this paper new Dutch clinical practice guidelines are presented. These guidelines are formulated in response to an expressed need to improve professional support for this group. We believe these guidelines are also relevant for other countries, since the evidence was gathered through systematic searches of international literature and none of the guidelines that we were able to find in other countries already included this evidence. New, or more detailed topics in the Dutch guidelines, in comparison with existing international guidelines, are added (e.g. young children). Three topics concerning caregiver burden are presented in more detail in this paper, which are based on systematic literature searches: partners at risk of burden, assessing burden in caregivers and interventions for caregivers.     

An exploration looking at the impact of domiciliary and day hospital delivery of stroke rehabilitation on informal carers

OBJECTIVES: To explore the impact of two methods of post-hospital stroke rehabilitation on both carers' perceptions of the health services offered and their quality of life. SETTING: East Dorset Health Authority. SUBJECTS: Forty-six informal carers were recruited from a sample of 106, initially identified from stroke patients participating in a larger randomized controlled trial. DESIGN: Qualitative methods. METHODS: Semi-structured interviews were used at baseline and six months to explore carers' perception of a good therapy, the advantages and disadvantages of the different services and their fulfilment with the services. In-depth thematic analysis was carried out to explore the impact of the two different methods of service delivery on carers' quality of life. RESULTS: Day hospitals provided carers with respite opportunities, whilst domiciliary stroke teams provided carers with better educational opportunities to be involved in therapy. No qualitative difference was found in the impact that the different services had on carers' quality of life, which were influenced by factors such as the degree of disruption that caring had on their lives, the loss of a shared life and the availability of social support. Ultimately, carers saw the services as providing benefit for survivors and not themselves. CONCLUSIONS: Domiciliary stroke teams provided informal stroke carers with skills that could help improve postdischarge stroke rehabilitation amongst stroke survivors. Informal carers also benefited from the respite elements of day hospital. A mixed model using both domiciliary care and day hospital care, could provide carers with the benefits of education, convenience and respite.     

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     

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.     

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.     

Community specialist palliative care: experiences of patients and carers

Specialist palliative care provides a range of services for patients and their carers who have complex needs. There is a need to identify what patients and carers gain from contact with the specialist palliative care nurse (SPCN) and what aspects of that care have a positive impact on their quality of life (QoL). The aims of the study were to gain insightful and credible accounts of participants' experiences of the SPCN; to consider those dimensions of care which impact on satisfaction; to discover whether the SPCN provides improvements in QoL and to explore whether experiences match expectations. A qualitative approach focused on the experience and individual meaning; it is the individual narratives produced by each participant that are the rich and interesting outcomes of this study. Both patients and carers reported satisfaction at being given time and being listened to, with the interviewees using words and phrases such as 'confidence', 'trust', knowledge', 'listens to' and 'a sense of being there'. The study shows the patient and carers' lack of knowledge about specialist palliative care while confirming the positive influence of the SPCN.