Informal Carers (informal + carer)

Distribution by Scientific Domains


Selected Abstracts


An exploratory study of anxiety in carers of stroke survivors

JOURNAL OF CLINICAL NURSING, Issue 13-14 2010
Nan Greenwood
Aims and objectives., To investigate anxiety in informal carers of stroke survivors in the first three months after discharge. Background., Informal carers, also called caregivers, play a vital role in supporting stroke survivors. However, caring for stroke survivors can have adverse consequences amongst carers such as burden, stress and reduced quality of life. Emotional distress is also commonly reported but anxiety has received less attention than depression. Design., Prospective, longitudinal, descriptive study. Method., Forty-five carers completed the Hospital Anxiety and Depression Scale on two occasions , within one month and at three months after discharge from stroke and rehabilitation units. Results., Carers were more likely to have scores indicating anxiety than depression. In the first month, half the carers (51·1%) scored in the cut-off for anxiety and a third were in the cut-off for depression (31·1%). At three months, the picture was very similar with nearly identical proportions in the anxious and depressed categories (48·9% and 28·9%, respectively). Changes in numbers of cases of anxiety and depression and in mean anxiety scores were non-significant but there was a significant decrease in depression scores (p = 0·048). Fourteen carers (31·1%) at one month and eleven (24·4%) at three months fell into both anxious and depressed categories. Conclusions., Anxiety is a relatively neglected emotional outcome in stroke carers. Our study suggests anxiety is an important issue very early in caring whilst other research suggests it remains prevalent for many months. Given the significant role carers play in rehabilitation of stroke survivors, greater recognition of their emotional state is required. Further, longitudinal research with larger sample sizes from a range of geographical areas and improved understanding of factors associated with anxiety is needed. Relevance to clinical practice., Nurses working in the community are ideally placed to identify and support carers suffering from anxiety. [source]


A systematic review of informal caregivers' needs in providing home-based end-of-life care to people with cancer

JOURNAL OF CLINICAL NURSING, Issue 10 2009
Penny E Bee
Aims., This paper presents the results of a systematic review examining the practical information needs of informal caregivers providing home-based palliative and end-of-life care to people with advanced cancer. Background., Modern hospice care has led to increases in home-based palliative care services, with informal caregivers assuming responsibility for the majority of care. In response, health policy emphasises the provision of palliative care services in which both the patient and carer receive adequate support throughout illness and death. While the emotional needs of carers have been extensively researched, their practical needs with respect to the provision of physical care are yet to receive systematic attention. Design., Systematic review. Methods., Eligible articles were identified via electronic searches of research and evidence-based databases, hand-searching of academic journals and searches of non-academic grey literature websites. Quality of research was assessed via accepted guidelines for reviewing non-randomised, observational and qualitative literature. Data were synthesised by comparing and contrasting the findings to identify prominent themes. Results., Research consistently highlights this lack of practical support, often related to inadequate information exchange. These deficits typically manifest in relatives adopting a ,trial and error' approach to palliative care. Informal carers request a greater quantity of practically-focussed information, improvements in quality and increased methods of dissemination. Conclusion., Synthesis of the literature suggests that home-based palliative care services have been insufficiently focussed on assisting informal caregivers acquire practical nursing skills. Relevance to clinical practice., Enhanced access to professional advice represents a potentially effective method of increasing carers' confidence in their ability to undertake practical aspects of home-based care. Evidence suggests that nurses and other health providers may better assist home-based carers by providing the information and skills-training necessary to facilitate this. This may necessitate the involvement of carers in the design and testing of new educational interventions. [source]


Exploring comprehensibility and manageability in palliative home care: An interview study of dying cancer patients' informal carers

PSYCHO-ONCOLOGY, Issue 9 2004
Anna Milberg
The presence of an informal carer is often a prerequisite for successful palliative home care, and the staff's ability to support informal carers' coping in such situations is important. Recent research has revealed that it is possible to achieve positive psychological states in palliative care despite the burdening situation. As there is a lack of theory-based coping studies, the aim of this study was to describe, within the context of palliative home care, two concepts in Antonovsky's theory of Sense of Coherence: comprehensibility (a perception that the challenge is understood) and manageability (a perception that the resources to cope are available). Tape-recorded semi-structured interviews with 19 informal carers during ongoing palliative home care were transcribed and analysed with a qualitative hermeneutic approach. Elements that facilitated comprehensibility included open information, symbolic information, basic life assumptions and previous knowledge. These were important for creating a congruent inner reality (as opposed to chaos). Resources contributing to manageability dealt with power, support, competence and accessibility, which on a more abstract level resulted in a feeling of togetherness (as opposed to isolation). The findings are discussed in relation to the complexity of communication between staff and carers within palliative care. Copyright © 2003 John Wiley & Sons, Ltd. [source]


Dying at home: community nurses' views on the impact of informal carers on cancer patients' place of death

EUROPEAN JOURNAL OF CANCER CARE, Issue 5 2010
B. JACK phd, bsc (econ), head of research, scholarship
JACK B. & O'BRIEN M. (2010) European Journal of Cancer Care19, 636,642 Dying at home: community nurses' views on the impact of informal carers on cancer patients' place of death Giving patients with cancer a choice in where they want to die including the choice to die at home if they so wish, underpin the recent UK government policies and is embedded in the End of Life Care Programme. However, this presents increasing challenges for the informal carers particularly with an increasingly aging population. Despite the policy initiatives, there remain a persistent number of patients with cancer who had chosen to die at home being admitted to hospital in the last days and hours of life. A qualitative study using two focus group interviews with community nurses (district nurses and community specialist palliative care nurses) was undertaken across two primary care trusts in the north-west of England. Data were analysed using a thematic analysis approach. The results indicated that informal carer burden was a key reason for prompting hospital admission. Recommendations for the development of a carer assessment tool with appropriate supportive interventions are made. [source]


Formal support of stroke survivors and their informal carers in the community: a cohort study

HEALTH & SOCIAL CARE IN THE COMMUNITY, Issue 6 2008
Chantal Simon PhD MSc MRCGP
Abstract This cohort study, aims to explore formal care provision to stroke survivors and their informal carers in the community in the UK. An initial cohort of 105 cohabitant carers of first-time stroke patients was recruited while the stroke patient was in hospital. Structured face-to-face interviews were carried out with carers prior to discharge of the stroke patient home, at 6 weeks after discharge, and 15 months after stroke. Questionnaires included measures of psychological health (CIS-R), physical health (self-rated health), social well-being (relationship quality and Sarason's social support questionnaire), handicap of the stroke survivor (Oxford Handicap Scale) and formal community support (amount of formal support and carer satisfaction). Multiple services were involved with most survivor,carer pairs (mean 5.4; range 2,9; SD = 1.7), and 74% of carers were satisfied with formal support provided. Number of services decreased with time (5.5 versus 4.1, t = 4.201, d.f. = 52, P < 0.001, 95% confidence interval: 0.71,2.01) but not time allocated. Using stepwise linear regression, service provision early after discharge was predicted by: level of handicap, recruitment centre, carer self-rated health, number of informal supporters and other care commitments. Satisfaction was predicted by quality of informal support and activity restriction. Fifteen months after stroke, predictors of formal care were: level of handicap, quality of informal support and previous caring experience. Predictors of satisfaction were: quality of the relationship between the stroke survivor and carer, age and mood. Quality of services was good, but carers lacked information, had insufficient help and were not consulted enough. Carer distress is common, yet not currently a factor influencing support provision. Formal care provided adapts with time reflecting the importance of quality of support from friends and family rather than quantity of informal supporters. These factors should be taken into consideration when planning and providing formal support for stroke survivors and their carers. [source]


Accessibility and equity of health and social care services: exploring the views and experiences of Bangladeshi carers in South Wales, UK

HEALTH & SOCIAL CARE IN THE COMMUNITY, Issue 3 2006
HV Tut Cert, Joy Merrell BSc (Hons)
Abstract There is a paucity of information regarding the extent and nature of caring provided by minority ethnic communities. The proportion of older people from these communities will dramatically increase in the next 20 years, which will be accompanied by increasing health and social care needs and an increased demand for carers. A qualitative, exploratory study was conducted to identify the health and social care needs of informal carers, who were caring for a dependent adult from a Bangladeshi community in South Wales, UK. This paper focuses on Bangladeshi carers' access to formal support services provided by the statutory, private and voluntary sectors to assist them with their caring responsibilities. The findings are based on data collected using face-to-face, focused interviews with 20 Bangladeshi carers. Purposive and snowball sampling were used to recruit the sample. The data were analysed using thematic content analysis. The dimensions of accessibility and equity of quality of care were drawn upon to aid understanding of the findings. Bangladeshi carers faced a number of barriers in accessing health and social service provision, which impeded uptake of these services. Additionally, there was evidence of inequity in service provision. Recommendations for improving the accessibility of health and social care services are proposed, which may assist in promoting more equitable services for carers from the Bangladeshi community. [source]


Non-pharmacological approaches for dementia that informal carers might try or access: a systematic review

INTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY, Issue 7 2010
Claire Hulme
Abstract Objective To review non-drug treatments for dementia; to provide a source of evidence for informal carers who want ideas about non-drug approaches for dementia, that they might try or that they could try to access. The systematic review addresses: what non-drug treatments work and what do they work for? What non-drug treatments might work and what for? What non-drug treatments do not work? Methods Literature searches of seven electronic databases (AMED, CINAHL, EMBASE, MEDLINE, PSYCINFO, Cochrane Library of Systematic Reviews and DARE) were carried out in November 2007 using the following search terms (or derivatives): dementia/Alzheimer's AND Review AND non-drug therapies and aimed at finding systematic reviews. Results Thirty-three reviews were identified; 25 were judged to be high or good quality. Studies within these systematic reviews were characterised by weak study designs with small sample numbers. Three interventions were found to be effective for use with particular symptoms of dementia: music or music therapy, hand massage or gentle touch and physical activity/exercise. Conclusions Whilst informal carers can apply some of the interventions highlighted in the home setting at little or no cost to themselves or to health or social care services, others are likely to require training or instruction. Service providers and commissioners should explore current and future provision of more structured group activities for people with dementia; in particular the provision of group music therapy and group exercise activities that meet the needs of both the person with dementia and their carer. Copyright © 2009 John Wiley & Sons, Ltd. [source]


An exploratory study of anxiety in carers of stroke survivors

JOURNAL OF CLINICAL NURSING, Issue 13-14 2010
Nan Greenwood
Aims and objectives., To investigate anxiety in informal carers of stroke survivors in the first three months after discharge. Background., Informal carers, also called caregivers, play a vital role in supporting stroke survivors. However, caring for stroke survivors can have adverse consequences amongst carers such as burden, stress and reduced quality of life. Emotional distress is also commonly reported but anxiety has received less attention than depression. Design., Prospective, longitudinal, descriptive study. Method., Forty-five carers completed the Hospital Anxiety and Depression Scale on two occasions , within one month and at three months after discharge from stroke and rehabilitation units. Results., Carers were more likely to have scores indicating anxiety than depression. In the first month, half the carers (51·1%) scored in the cut-off for anxiety and a third were in the cut-off for depression (31·1%). At three months, the picture was very similar with nearly identical proportions in the anxious and depressed categories (48·9% and 28·9%, respectively). Changes in numbers of cases of anxiety and depression and in mean anxiety scores were non-significant but there was a significant decrease in depression scores (p = 0·048). Fourteen carers (31·1%) at one month and eleven (24·4%) at three months fell into both anxious and depressed categories. Conclusions., Anxiety is a relatively neglected emotional outcome in stroke carers. Our study suggests anxiety is an important issue very early in caring whilst other research suggests it remains prevalent for many months. Given the significant role carers play in rehabilitation of stroke survivors, greater recognition of their emotional state is required. Further, longitudinal research with larger sample sizes from a range of geographical areas and improved understanding of factors associated with anxiety is needed. Relevance to clinical practice., Nurses working in the community are ideally placed to identify and support carers suffering from anxiety. [source]


Older people and falls: health status, quality of life, lifestyle, care networks, prevention and views on service use following a recent fall

JOURNAL OF CLINICAL NURSING, Issue 16 2009
Brenda Roe
Aim and objective., This study has investigated older people's experiences of a recent fall, its impact on their health, lifestyle, quality of life, care networks, prevention and their views on service use. Background., Falls are common in older people and prevalence increases with age. Falls prevention is a major policy and service initiative. Design., An exploratory, qualitative design involving two time points. Method., A convenience sample of 27 older people from two primary care trusts who had a recent fall. Taped semi structured qualitative interviews were conducted and repeated at follow up to detect change over time and repeat falls. Data were collected on their experience of falls, health, activities of living, lifestyle, quality of life, use of services, prevention of falls, informal care and social networks. Content analysis of transcribed interviews identified key themes. Results., The majority of people fell indoors (n = 23), were repeat fallers (n = 22) with more than half alone when they fell (n = 15). For five people it was their first ever fall. Participants in primary care trust 1 had a higher mean age than those in primary care trust 2 and had more injurious falls (n = 12, mean age 87 years vs. n = 15, mean age 81 years). The majority of non-injurious falls went unreported to formal services. Falls can result in a decline in health status, ability to undertake activities of living, lifestyle and quality of life. Conclusions., Local informal care and support networks are as important as formal care for older people at risk of falls or who have fallen. Access to falls prevention programmes and services is limited for people living in more rural communities. Relevance to practice., Falls prevention initiatives and services should work with local communities, agencies and informal carers to ensure equitable access and provision of information, resources and care to meet the needs of older people at risk or who have fallen. [source]


Exploring comprehensibility and manageability in palliative home care: An interview study of dying cancer patients' informal carers

PSYCHO-ONCOLOGY, Issue 9 2004
Anna Milberg
The presence of an informal carer is often a prerequisite for successful palliative home care, and the staff's ability to support informal carers' coping in such situations is important. Recent research has revealed that it is possible to achieve positive psychological states in palliative care despite the burdening situation. As there is a lack of theory-based coping studies, the aim of this study was to describe, within the context of palliative home care, two concepts in Antonovsky's theory of Sense of Coherence: comprehensibility (a perception that the challenge is understood) and manageability (a perception that the resources to cope are available). Tape-recorded semi-structured interviews with 19 informal carers during ongoing palliative home care were transcribed and analysed with a qualitative hermeneutic approach. Elements that facilitated comprehensibility included open information, symbolic information, basic life assumptions and previous knowledge. These were important for creating a congruent inner reality (as opposed to chaos). Resources contributing to manageability dealt with power, support, competence and accessibility, which on a more abstract level resulted in a feeling of togetherness (as opposed to isolation). The findings are discussed in relation to the complexity of communication between staff and carers within palliative care. Copyright © 2003 John Wiley & Sons, Ltd. [source]